Download Bioethics, Medical Ethics and Health Law Programme and Book of

UNESCO Chair in Bioethics 9th World Conference
Bioethics, Medical
Ethics and Health Law
Programme and
Book of Abstracts
Royal Continental Congress Centre
Naples, Italy
November 19-21, 2013
Secretariat: ISAS International Seminars, POB 574, Jerusalem 91004, Israel, Tel: +972-2-6520574, [email protected]
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Table of Contents
Programme at a Glance
2-3
Social Programme
4
Message from the Conference Presidents
5
UNESCO Chair in Bioethics, Unit Heads, Departments and Sponsors
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UNESCO Chair Document Center Network
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Local Ethics Committee Members
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Call for Establishment of New Bioethics Units
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General Information
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Scientific Programme - Oral Presentations
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Tuesday, November 19
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Wednesday, November 20
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Thursday, November 21
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Poster Presentations
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Abstracts
Oral Presentations (alphabetical order by author)
Poster Presentations (by day and by presenter)
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167
Tuesday, November 19
169
Wednesday, November 20
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Index of Chairmen, Speakers and Authors
Map of Conference Venues and Location of Halls
Social Programme
Tuesday, November 19 - 19:00 in Hotel Restaurant
Welcome Gala Get-together Dinner with Musical Accompaniment
Wednesday November 20
19:30 Musical Performance in Hall “A” - Amelia and Francesca
Rondinella preceded with wine and socializing
21:00 Farewell Dinner in Hotel Restaurant
Optional Tours: See conference registration desk
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inside back cover
Message from the Conference Presidents
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President Carmi’s Message
For the first fifty years of bioethics we discussed the construction and development of its concept. The original idea slowly
gained its directions and followers, and constitutes a comprehensive perception concerning many issues that are critical
for our human society. We are now facing a second stage, a new task, that seems to be even more important, complex
and difficult, namely the delivering of our message to society, by planting the ethical values into the soul of the people
and into their daily life and behavior.
Our task may be and should be realized in two ways, by two different tools: An educational tool and a legal tool. The
educational tool will consist of the use of novel methods that will enable us access to the minds of potential “consumers”
- the students, the caretakers, the patients and the public at large. The theory and language of bioethics should be
translated and adopted by the legislator and the judiciary, and constitute the legal tool.
A concrete example can be found in the Universal Declaration of Bioethics and Human Rights of UNESCO, and its
application by the UNESCO Chair in Bioethics. The UNESCO Declaration includes 15 ethical principles that have been
approved and accepted by all the states worldwide. Our UNESO Chair in Bioethics was authorized to deliver the message
of the Declaration to the students all over the world. The first step has been made. We have published ten guidance
books for teachers and have established not less than 32 Units in 32 academic institutes on five continents. Each Unit is
committed to the advancement of ethics education in its university and around its country.
The experts that attend our conference in Napoli are expected to undertake this mission, to start the second step and
to establish additional units in their own institutes. You have the knowledge and the close contact to the field of bioethics,
you understand its relevance and importance, you have the tools, the wisdom and the courage to motivate this process.
Let the Conference in Napoli function and serve as the bioethical lighthouse for the next generation.
Prof. Amnon Carmi
Zefat Academic College
President Buccelli’s Message
More than 40 years have passed from the brilliant intuition by Potter who proposed ethical thought as the science of
survival and a bridge towards the future of human existence threatened by the dramatic progress and massive use of
biotechnologies and detached from the necessary focus on moral values and principles. It seems now convenient to review
the events that have taken place along that bridge connecting biological knowledge with human values. This must be
done in view of a more aware and constant development aiming at a salvational equilibrium between science and society.
In this framework, ethical committees, established to meet the need for a balanced cultural and moral mediation at the
highest levels, in the confrontation between scientific progress and human rights in a pluralistic and inter -as well asmultidisciplinary framework, are fitly taking part in the spread and progress of bioethics towards creating a correct
relationship between anthropology, ethics and scientific research.
For such a reason, the Ethical Committee for Biomedical Activities “Carlo Romano” of the Università degli Studi di Napoli,
has been engaged for a long time in the promotion and defense of bioethical and medical deontological principles as
well as in the ethical training of medical and non-medical staff at international level too, and is now proud to collaborate
with great enthusiasm to the organization of the 9th World Conference of the UNESCO Chair in Bioethics concerning
the future prospects of Bioethics in the 21st Century. The fruitful collaboration with the UNESCO Chair in Bioethics and
their mission as well as with the European Centre of Bioethics and Quality of Life - UNESCO Chair in Bioethics Italian Unit
and the great appreciation for Prof. Carmi’s and Dr. Vasinova’s unrelenting activity have contributed to establishing an
increasingly closer relationship between the Committee and the above Institutions.
Therefore, the present World Conference represents the fair reward for the efforts made by the Committee’s members
and Secretariat for their indefatigable activity in favor of a clinical and experimental medicine that respects people and
their personal autonomy while being necessarily aware of the need for a balanced scientific progress.
I am convinced that this large pool of energies, competences and enthusiasm by the Congress participants will be
tantamount to the progress and success of bioethics in the years to come, also thanks to the contribution of Italian experts
and scholars among whom we may count many students.
I therefore wish everybody fruitful discussions in the beautiful city of Naples rich in history, sensitivity and cultural traditions.
Prof. Claudio Buccelli
University of Naples Federico II Ethics Committee Director & International Office for Bioethics Research Head & UNESCO
Chair in Bioethics International Network Scientific Coordinator
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The UNESCO Chair in Bioethics
Presidents of the Conference
Prof. Amnon Carmi Prof. Claudio Buccelli
Vice President
Dr. Miroslava Vasinova
International Scientific Committee
Dr. Yoram Blachar (Coordinator)
Prof. Shai Ashkenazi, Dr. Oren Asman, Dr. Jeff Blackmer, Prof. Russell D’Souza,
Dr. Leonid Eidelman, Dr. Dafna Feinholz, Adv. Annabel Seebohm,
Adv. Leah Wapner, Dr. Cecil B. Wilson, Prof. Chonqi Wu
Heads of Units
Albania: Dr. Altin Stafa
Argentina: Prof. Moty Benyakar
Armenia: Dr. Susanna Davtyan
Australia: Dr. Irina Pollard
Austria: Dr. Gabriele Werner-Felmayer
Azerbaijan: Prof. Vugar Mammadov
Brazil: Prof. Jose Thome
Bulgaria: Prof. Sashka Popova
Canada: Prof. Joel Lamoure
China: Prof. Li Zhen
Croatia: Prof. Sun ana Roksandi Vidli ka
Czech Republic: Prof. Tomas Dolezal
Fiji: Ms. Sharon Biribo
Germany: Prof. Dr. Nils Hoppe
India Nodal Center: Prof. Dr. P. Thangaraju,
Prof. Dr. D. Balakrishnan
North India: Prof. Mushtaq Margoob, Prof.
Rafiq Pampori
South India: Dr. Princy Louis Palaty
Kerala: Prof. Dinesan Narayanan
West India: Prof. Anu Kant Mittal
Indonesia: Prof. Sajid Darmadipura
Israel: Prof. Shai Linn
Italy: Dr. Miroslava Vasinova
Japan: Prof. Mitsuyashu Kurosu
Macedonia: Prof. Mentor Hamiti
Malaysia: Prof. Dato Mohd Zin bin Bidin
Nigeria: Prof. Yohanna Dangata
Pakistan: Prof. Rizwan Taj
Poland: Prof. Joanna Rozynska
Russian Federation - St. Petersburg:
Dr. Galina Mikirtichan
Russian Federation - Volgograd: Prof. Natalia Sedova
Serbia: Prof Vojin Rakic
Sri Lanka: Dr. Harischandra Gambheera
Taiwan: Prof. Daniel Fu-Chang Tsai
Ukraine: Dr. Radmila Hrevtsova
USA: Dr. Harold J. Bursztajn, Dr. Terry Bard
Vietnam: Prof. Nguyen Duc Hinh;
Dr. Tran Thi Thanh Huong
Asia Pacific Bioethics Network:
Prof. Russell D’Souza
Education Department
Argentina: Moty Benyakar
Australia: Irina Pollard, Russell D’Souza, Giuliana Fuscaldo
Azerbaijan: Vugar Mammadov
Bulgaria: Sashka Popova
Canada: Joel Lamoure
Israel: Guy Enosh
Italy: Fulvia DeMatteis, Anna Maria Traversa,
Miroslava Vasinova
Nigeria: Yohanna Dangata
Serbia: Zoran Todorovic
USA: Miriam Cotler
Organized in collaboration with:
• Ethics Committee for Biomedical Activities “Carlo
Romano” and the International Office for Bioethics
Research of the Naples Federico II University
• The European Centre for Bioethics and Quality of
Life - UNESCO Chair in Bioethics Unit
• LifeLong Learning Center of the Naples l’Orientale
University
The conference is under the auspices of:
• United Nations Educational, Scientific and Cultural
Organization (UNESCO)
• World Medical Association (WMA)
• Israel Medical Association (IMA)
• Fourth International Conference, Zefat Bioethics
Forum, Zefat Academic College
• International Center for Health, Law and Ethics,
Haifa University
• China Health Law Society
• World Association of Medical Law (WAML)
• World Psychiatric Association (WPA)
Research Department
Albania: Altin Stafa
Argentina: Juan Jorge Michel Farina
Armenia: Susanna Davtyan
Australia: Michael Lupton, Russell D’Souza, Giuliana
Fuscaldo, Mirko Garasic
Austria: Gabriele Werner-Felmayer
Belgium: Laurent Ravez
Brazil: Jose Thome
Bulgaria: Sashka Popova
Canada: Joel Lamoure
Czech Republic: Renata Veselska
Georgia: Irma Manjavidze, Eka Sanikidze
Israel: Guy Enosh, Yoram Blachar, Haim Knobler
Italy: Miroslava Vasinova, Paolo Benanti, Nunzia
Cannovo, Rosa Maria, Gaudio, Pasquale Giustiniani,
Alessandra Pentone, Anna Maria Traversa
Japan: Mitsuyasu Kurosu
Macedonia: Mentor Hamiti
Mexico: Ma de Luz Casas-Martinez
Nigeria: Yohanna Dangata
Serbia: Jovan Babic, Dragoslav Marinkovic, Vojin Rakic
South India: Princy Louis Palaty
Switzerland: Lazare Benaroyo
Taiwan: Daniel Fu-Chang Tsai
UK: Rhys Carwyn-Hooper
USA: Terry Bard, Miriam Cotler, Kenneth Goodman
Documents Center of the International Network of UNESCO Chair in Bioethics
The new framework
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The UNESCO Chair in Bioethics
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The Bioethics Documents Center of the International
Network of UNESCO Chair in Bioethics
I. Purposes: For establishing a comprehensive
documents center for collecting and providing
bioethics references, teaching materials and related
publications, the International Network of the
UNESCO Chair in Bioethics, as commissioned by
Director Professor Carmi, is planning to set up a
“Bioethics Documents Center” under the Network
Website.
II. Contents: For providing more comprehensive
function and presentation, we will use “Bioethics
Documents center” to substitute the original
category “Publication”. The “Bioethics Documents
Center” will contain five sub-categories including:
“Case book series”, “Other UNESCO bioethics
books”, “Unit Country publications”, “Bioethics
multi-media” and “Other types of publications”.
1. Case book series: keep the “case book series”
which already exist.
2. Other UNESCO bioethics books: other related
bioethics books published by UNESCO.
3. Unit country publications: bioethics books, papers,
and other publications published and provided
by all unit countries.
4. Bioethics multi-media: bioethics films, dramas,
other multi-media publications and links.
5. Other publications: relevant publications but not
from our unit countries.
III. Framework of the Bioethics Documents Center
Website
The new Bioethics Documents Center will be arranged
according to following framework with sub-categories.
IV. Working Plan
Once approved by Director Prof. Carmi, the UNESCO
Chair in Bioethics secretariat and website maintaining
unit will start to contact and collect bioethics
documents from contact persons and Unit countries
and do the website revision.
Local Ethics Committee
NAPLES FEDERICO II ETHICS COMMITTEE
President
Prof. Buccelli Claudio
Vice President
Prof. De Placido Sabino
Secretary
Prof. Mastronardi Pasquale
Members
Dr. Amirante Igino
Prof. Annunziato Lucio
Dr. ssa Bryce Jane
Dr. D’Onofrio Gaetano
Dr. Cacciapuoti Giuseppe
Dr. ssa Cannovo Nunzia
Dr. Cimino Filiberto
Prof. Consiglio Eduardo
Avv. Cortese Silvana
Prof. De Divitiis Oreste
Prof. Del Forno Domenico
Prof. De Michele Giuseppe
Prof. Di Renzo Gianfranco Maria Luigi
Prof. Donisi Carmine
Dr. ssa Gasparini Nicoletta
Prof.ssa Izzo Paola
Prof. Lobello Roberto
Prof. Lombardi Gaetano
Prof. Rossi Guido
Prof. Rubba Paolo
Prof. Saccà Luigi
Dr. ssa Vozza Antonietta
EUROPEAN CENTRE FOR BIOETHICS AND QUALITY OF LIFE
UNESCO Chair in Bioethics Italian Unit
President: Dr. Miroslava Vasinova
Vice President: Avv. Agata Bonaudo
Secretary General: Dr. Patrizia Scaglia
Treasurer: Prof. Anna Maria Traversa
Scientific Director: Prof. Carlo Pasetti
Scientific Committee Members: Dr. Antonio Belloni,
Avv. Stefano Bonaudo, Dr. Antonio Colotto,
Dr. Fulvia Dematteis, Dr. Tiziana Devoti,
Dr. Stefano Ghidoni, Dr. Antonella Migliore,
Anna Maria Traversa
Honorary Members: Mons. Piero Monni,
Prof. Antonio Piga Rivero, Dr. Giacomo Sado
Founder Members: Dr. Maurizio Castellli,
Dr. Antonio Cerruti, Dr. Andrea Leonardi
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The UNESCO Chair in Bioethics promotes
A Call for the Establishment
of New Bioethics Units
You are invited to establish a new UNIT at your Institute!
The United Nations Educational Scientific and Cultural
Organization (UNESCO) established (2001) the
UNESCO Chair in Bioethics
The purpose of the CHAIR is to build, activate, co-ordinate
and stimulate an International Network of Units in Academic
institutes for ethics education.
The Chair has established until now 33 Units in 33 countries
in the five Continents.
If you wish to establish a new UNESCO Unit in your own
institute you may forward your application to:
[email protected]
For more details, guidelines and list of other Units,
see: www.unesco-chair-bioethics.org
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General Information
Conference Venue:
Halls A-H
Royal Continental Congress Center
Via Partenope 38-44
Naples, Italy
Tel. 081.7644621
Halls I-K
L’Orientale University
Palazzo Du Mesnil
Via Partenope 10/A - 80121
Naples
Tel. 081.6909121
(5 minutes walk from venue - see map on inside back cover)
Language & Simultaneous Translation:
The World Conference will be held in English.
Simultaneous translation Italian/English & English/Italian
will be provided in Halls A, B, and I, and consecutive
translation in halls J and K
Conference Secretariat:
ISAS International Seminars
POB 574, Jerusalem 91004, Israel
Tel: +972-2-6520574
Fax: +972-2-6520558
[email protected]
www.isas.co.il/bioethics2013
Local PCO:
Defla Organizzazione Eventi
Via del Parco Margherita, 49/3
80121, Naples, Italy
Tel: +39 081402093, Fax: +39 0810606133
[email protected]
In case of emergency: +39 334 7618996
Press Office Adviser: Dr. Giacomo SADO
com - mobil 0039 335 57 89671
The conference secretariat appreciates the generous
work of Giacomo Sado and the heads of the Naples
Municipality and Campania Regional administration
Press Offices
Conference secretariat and Press Office are located
in the Borbonica meeting room near the Auditorium Hall A
Name badges: Your personal name badge serves as
your passport to the scientific sessions. Participants
are expected to wear their badges visibly at all times.
No badge = no entry. Badge replacement costs 25.
Poster presentations should be put up in the lobby
area from 08:00-09:00 on the morning of presentation.
A hostess will be available to help attach the posters
each morning until 10:00. Posters must be removed
at the end of the day. The Organizers will not be
responsible for posters that have not been collected.
Business Centre:
Printing, copying and other office requirements can
be purchased at the Business Centre located in the
Royal Continental Hotel.
Accompanying Persons:
Accompanying persons do not have entry to lecture
halls. The registration fee includes the gala get-together
dinner, farewell dinner and folklore evening and a half
day tour of Naples - Walk with the Kings, Thursday,
November 21. Tour will depart Royal Continental at
13:00
Note:
ISAS International Seminars, Defla Organizzazione
Eventi and all sponsors shall not be responsible for
and shall be exempt from any liability in respect of
any loss, damage, injury, accident, delay or
inconvenience to any person, or luggage or any other
property for any reason whatsoever, for any tourist
services provided. Personal travel and health insurance
is recommended.
Gala Get-Together Dinner:
Tuesday, November 19 at 19:00 Hotel Restaurant
(Dress - informal)
Price: 60
Folklore Evening and Farewell Dinner:
Wednesday, November 20 at 19:30
Musical performance Hall A
Dinner Hotel Restaurant at 21:00 (Dress-informal)
Price: 70
Tickets must be purchased in advance
Hospitality desk:
November 19 and November 20: 09:00-18:30
November 21:
09:00-14:00
Tours:
For further information and questions about
tours, please contact the hospitality desk.
Certificate of Participation: A certificate of
participation will be supplied upon request.
Dine Around:
A list of nearby recommended restaurants will be
provided at the conference.
Access to lecture rooms: Your registration fee includes
entry to sessions, conference programme and book
of abstract, and coffee breaks. Seating is on a “firstcome, first-served” basis. We recommend you go to
the lecture room well before the session starts. Safety
regulations require us to limit access to the session if
the room is filled to capacity.
A sweater or jacket is recommended, as the conference
rooms may be cool.
UNESCO Chair in Bioethics 9th World Conference
Bioethics, Medical
Ethics and Health Law
Scientific Programme
Oral Presentations
Poster Presentations
Tuesday, November 19, 2013
08:00-09:00
Welcome coffee
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Your own personal genome: ethical issues in directto-consumer (DTC) genomics services
Amy Michelle DeBaets, USA
09:00-10:30
CONSULTA WORKSHOP (1)
Hall B
ETHICS AND MEDICINE: ISSUES AND PROBLEMS IN
SOME AWARD AREAS – I
Co-Chairs: Paolo Procaccianti, Filiberto Cimino
Current legislation in the field of preimplantation
genetic diagnosis in European Union members
Francesco Paolo Busardò, Italy
Which consent in biobank-based research
Gianluca Montanari Vergallo, Italy
The donation of a person’s body after death: a question
of ethics and science
Alessandro Bonsignore, Italy
Clinical experimentation on vulnerable subjects: issues
on the evaluation of a study on patients of the Italian
secure hospitals (OPG)
Valeria Marino, Italy
Immigrants! How Italian emergency health workers
perceive the “other” patients
Paola Antonella Fiore, Italy
Treatment prospects in sex offenders with paraphilic
disorders: pharmacological androgen deprivation
between the need for social defense and the right to
health
Roberta Carrossino, Italy
The ethics of preimplantational diagnosis in “savior”
embryos
Iuri Cosme Dutra da Silva, Brazil
Enhancing human persons: does it violate human
“Nature”?
Jason T. Eberl, USA
Genetic data protection and reuse: ethical implications
and legal issues
María Magnolia Pardo-López, Spain
WPA SECTION ON PSYCHIATRY,
LAW AND ETHICS (1)
Co-Chairs: Oren Asman, Harold J. Bursztajn
Hall E
Ethical considerations in legal representation of older
clients with diminished capacity or impaired
competence
Meytal Segal-Reich, Israel
The study of massive psychic trauma and resilience is
fundamental for ethically informed psychiatric
diagnosis, treatment and forensic evaluation
Harold J. Bursztajn, USA
Informed consent in clinical studies on cognitively
impaired persons: an ethical dilemma in research
Gary Sinoff, Israel
Experiencing seclusion: a phenomenological study
Dave Holmes, Canada
From Bonifacio’s serum to stamina method:
the “overpromising” of alternative therapies
Giacomo Tassi, Italy
Long acting injections antipsychotics: ethical issues
Irket Kadilli, Italy
The “Stamina” case: bioethical issues
Filomena Casella, Italy
BIOETHICS GENERAL (1)
Co-Chairs: Vojin Raki , Ariela Lowenstein
SIOF NATIONAL CONGRESS ON
Hall C
FORENSIC DENTISTRY WORKSHOP (1)
THE COMMUNICATION OF THE MISTAKE BETWEEN
ETHICS AND PROFESSIONAL ETHICS
Co-Chairs: P. di Michele, P. Frati, A. Polimeni
Bio-enhancement or ultimate harm
Vojin Raki , Serbia
The physician’s duty to inform in patient’s decision
making process
Francesco De Stefano, Italy
Ageing at the beginning of the 21st century: longevity,
ageism, stem cells research and active ageing
Ariela Lowenstein, Israel
What went wrong? The full disclosure policy to the
patient
Vittorio Fineschi, Italy
Collective consequences of a very long life: the right
to life extension could / should be considered a human
right
Didier Coeurnelle, France
The full disclosure policy: a difficult balancing between
information to the patient and communication to the
odontologists
Alberto Laino, Italy
Dentistry and disability
Gabriela Piana, Italy
GENETICS (1)
Hall D
Co-Chairs: Jason T. Eberl, María Magnolia Pardo-López
Hall F
Personal identity and extended life: bioethical concerns
Rosa Rantanen, Finland
The triangle of dependence in stem cell science: the
impact of law, ethics and science on stem cell research
and the phenomenon of stem cell tourism
Bianca Buechner, Germany
ETHICS GENERAL (1)
Co-Chairs: Bert Vanderhaegen, Sophy Dombe
Hall G
Human rights and Nigerian prisoners: are prisoners
not humans?
Istifanus Joshua, Nigeria
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Tuesday, November 19, 2013
9
Consciousness: cognitive neurosciences and the problem
brain/mind
Massimo Gandolfini, Italy
Integration of medical law and ethics into medical
training and practice: lessons from the Nigerian story
Yohanna Dangata, Nigeria
Empirical ethics and its eternal problem
Bert Vanderhaegen, Belgium
HEALTH CARE SYSTEMS ETHICS (1)
Co-Chairs: John P. Conomy, Carina Fourie
Bio-ethics issues in literature and the arts: “Ecology of
the Soul” mini-essays
Marija Emilija Kukubajska, Macedonia
Is there an ethical dimension to contemporary health
care reform in the United States of America?
John P. Conomy, USA
Together rather than separately - conducting a
discussion about ethical dilemmas in a regional
multidisciplinary multi-professional forum
Sophy Dombe, Israel
Vertical health programmes: ethics and effects on
integrated health care delivery systems in Africa
Bege Dauda, Belgium
MEDICAL ETHICS (1)
Hall H
Co-Chairs: Abdul Halim Sawas, Luz Maria Pichardo Garcia
Internet, bioethics, and trends of conduct
Luz Maria Pichardo Garcia, México
Bioethical demand for clinical pharmacokinetic
Abdul Halim Sawas, Saudi Arabia
Over reliance upon diagnostic aids and its implications
upon our practice as physicians
Uri Netz, Israel
Hall K
Public accountability and the ethics of health care
reform decision-making in Switzerland
Carina Fourie, Switzerland
Ethical and psychological aspects of trust in the health
care system in South Bulgaria
Mariana Liotchkova, Bulgaria
Towards an ethical analysis of public health reform:
why it matters among the indigenous communities in
the Philippines
Klein R. Fernandez, Australia
11:00-12:30
ETHICS EDUCATION
Hall I
Co-Chairs: Assya Pascalev, Washirasorn Saengsuwan
Developing ethical understanding and designing a
rubric to measure progress
Marie Catherine Letendre, Italy
The interdisciplinary ethics course at Howard University
Health Sciences Center: a model of ethics education
for in the 21st Century
Assya Pascalev, USA
Training the moral muscle: a competencies based
approach to the teaching and evaluation of
professional ethics
Johannes Renders, The Netherlands
Ethical behavior in temporal perspective: ethical mirage
phenomenon in applied ethics
Daniela Sotirova, Bulgaria
Thai teachers’ opinions and reflective thinking on
ethics in science from participating in an academic
service project for science teacher development
Washirasorn Saengsuwan, Thailand
OPENING SESSION
Hall A
Claudio Buccelli, Conference President, Naples University
Federico II Ethics Committee Director & International Office
for Bioethics Research of the European Centre for Bioethics
and Quality of Life Head & UNESCO Chair in Bioethics
International Network Scientific Coordinator
Amnon Carmi, Conference President, UNESCO Chair in
Bioethics Holder, Zefat Academic College
Otmar Kloiber, Secretary General, World Medical
Association
Georges Kutukdjian, Member of the Scientific Committee
of the International Bioethics Society (SIBI)
Massimo Marelli, Chancellor of the Naples Federico II
University
Stefano Caldoro, President of Campania Region
Sen. Raffaele Calabrò, Advisor for Health of Campania
Region
Guido Trombetti, Universities Regional Counselor for
Scientific Research, Statistics, Information Technology and
Informatics
BIOETHICS EDUCATION (1)
Hall J
Co-Chairs: Kevin Gary Behrens, Yohanna Dangata
Luigi De Magistris, Mayor of Naples
Mainstreaming African ethics into the bioethics
curriculum
Kevin Gary Behrens, South Africa
Lida Viganoni, L’Orientale University of Naples Chief Rector
Theory and practice of hospital training for medical
ethics - consensus building method with spatiotemporal perspective
Kumiko Yoshitake, Japan
Bioethics education in a formative and wide model
Valeria Trigueiro Santos Adinolfi, Brazil
Giovanni Persico, AOU Federico II General Manager
Miroslava Vasinova, Conference Vice-President, President
of the European Centre for Bioethics and Quality of Life UNESCO Chair in Bioethics Italian Unit
Last minute administrative announcements
And now let the conference begin
Tuesday, November 19, 2013
15
9
12:30-13:30
Optional lunch break and poster session
GENETICS (2)
Co-Chairs: Froldi Rino, Catanesi Roberto
13:30-15:00
The moral challenges of predictive genetic information
Gösta Gantner, Germany
WORLD MEDICAL ASSOCIATION WORKSHOP Hall A
DECLARATION OF HELSINKI
Co-Chairs: Yoram Blachar, Otmar Kloiber
Discussion and ethics-based review of the revisions in
either scenario and suggested changes if the policy is
not yet approved; if the policy is approved, it will also
include a discussion of the potential practical impact
of the changes from an ethics perspective
Jeff Blackmer, Canada
Discussion and legal-based review of the revisions in
either scenario and suggested changes if the policy is
not yet approved; if the policy is approved, it will also
include a discussion of the potential practical impact
of the changes from a legal and regulatory perspective
Annabel Seebohm, Germany
Summary and next steps
Otmar Kloiber, WMA
Questions and discussion
CONSULTA WORKSHOP (2)
Hall B
ETHICS AND LAW IN FORENSIC MEDICINE – II
Co-Chairs: Mariano Cingolani, Pierantonio Ricci
The evaluation of ‘malpractice’ is always carried out
pursuant to the code of ethics?
Sara Campilongo, Italy
The reliability of the child’s testimony: forensicpsychiatric issues and ethical-deontological implications
Gaspare Ronchi, Italy
The right to be born healthy in the light of the Supreme
Court’s judgment N. 16754 of the 02.10.2012
Marianna Longo, Italy
Medico-legal aspects of sexual violence in the penal
codes of the historic states of Italy during the first half
of the XIX Century
Alessandro Feola, Italy
Hall D
The challenge of medical progress for international
soft law - the example of next-generation-sequencing
Fruzsina Molnár-Gábor, Germany
Science and law in the age of genetics
Silvia Salardi, Italy
Acceptable applications of Preimplantation Genetic
Diagnosis (PGD) among Israeli PGD users
Shachar Zuckerman, Israel
WPA SECTION ON PSYCHIATRY,
Hall E
LAW AND ETHICS (2)
Co-Chairs: Tal Weizman, Maria Joana de Sá Ferreira
Compulsory psychiatric hospitalization of minors - the
impossible boundaries of autonomy?
Dorit Porat, Israel
Ethical dilemmas relating to the diagnosis and
treatment of people with autistic spectrum disorder
- the psychiatric perspective
Nachum Katz, Israel
Ethical dilemmas stemming from compulsory
hospitalization in a mental health facility: the
complexities of the multiple loyalties of the psychiatrist
Janna Yakirevitz, Israel
Ethical dilemmas regarding the place of mental health
within prison system
Tal Weizman, Israel
Psychiatric compulsory admissions at Beatriz Ângelo
Hospital: a report from one year experience
Maria Joana de Sá Ferreira, Portugal
BIOETHICS GENERAL (2)
Hall F
Co-Chairs: Brunetto Chiarelli, Johanna Kostenzer
Global bioethics: historical and present perspectives
Brunetto Chiarelli, Italy
Medication abortion and conscientious objection
Marta Giammaria, Italy
Bioethic(s): bridge to the future (of sport)
Franco Bruno Castaldo, Italy
Communicating errors and learning from own errors:
the mediation as educational instrument
Matteo Gulino, Italy
Gender-biased prenatal sex selection - international
organizations and the ethical reasons behind dealing
with the issue
Johanna Kostenzer, Austria
Bioethics and human right’s protection: the role of
forensic evidence
Rossana Cecchi, Italy
SIOF NATIONAL CONGRESS ON FORENSIC
DENTISTRY WORKSHOP (2)
THE ROLE OF GUIDELINE IN DENTISTRY
Co-Chairs: P. di Michele, P. Frati, A. Polimeni
Hall C
Implementing dentistry guidelines in children: pediatric
dentistry
Antonella Polimeni, Italy
Discussion
Through the spectacles of tomorrow: toward a casuistic
model for guiding choice in human enhancement
issues
Anders Herlitz, Sweden
ETHICS GENERAL (2)
Co-Chairs: Corinna Jung, Jiri Simek
Hall G
Ethics committees in politics - the meaning of ethical
deliberation for political decision-making
Corinna Jung, Switzerland
16
Tuesday,
November
19, 2013
Scientific
Programme
Volunteerism in the context of pro-social behavior and
a possibility of its education
Jiri Simek, Czech Republic
To free ourselves we need to be slaves of the rules…
Alessandra Pentone, Italy
MEDICAL ETHICS (2)
Hall H
Co-Chairs: Miriam I. Siebzehner, Pieter Carstens
Big things cost more
Miriam I. Siebzehner, Israel
Revisiting the infamous Pernkopf Anatomy Atlas:
historical lessons for medical law and medical ethics
Pieter Carstens, South Africa
Primum non nocere v. caveat emptor
Ross W. Halpin, Australia
Medical futility (MF) - doctor’s point of view: medical
futility in Israel health care system 2013
Avi Levin, Israel
9
HEALTH CARE SYSTEMS ETHICS (2)
Hall K
Co-Chairs: Mustafa Volkan Kavas, Jochen Vollmann
Pay For Performance (P4P) and estrangement: moral
transformation of residents under a new payment
policy
Mustafa Volkan Kavas, Turkey
Does the ‘health brain drain’ pose ethical concerns?
If so what can and should be done about it?
Theodore Pang, UK
Reducing medical education cost with cross subsidy
Djoko Santoso, Indonesia
“Personalised medicine”: priority setting and
opportunity costs at an international scale
Jochen Vollmann, Germany
Ethical issues of insurance medicine
Ekaterine Sanikidze, Georgia
15:00-16:30
The creation of an ethical code on the limits of intimacy
and touch in complementary medicine
Maya Peled-Raz, Israel
WORLD MEDICAL ASSOCIATION WORKSHOP Hall A
HUNGER STRIKES
Co-Chairs: Yoram Blachar, Otmar Kloiber
INTERCULTURAL BIOETHICS & LIFELONG
Hall I
LEARNING WORKSHOP (1)
BIOETHICS, LIFELONG LEARNING & SOCIAL INCLUSION – I
Co-Chairs: Luigia Melillo, Anna Maria Traversa
Introduction to the session by a moderator and
background information
A network to enhance lifelong learning
Aureliana Alberici, Italy
Universality of human rights and cultural diversity:
some thoughts from the perspective of migrations
Giuseppe Cataldi, Italy
Hunger strikes and other forms of protest fasting:
medical dilemmas, manipulation and medicalization
Hernan Reyes, Chile
Ethical aspects of hunger strikes; dilemmas for health
professionals
Vivienne Nathanson, UK
Migrating modernity’s
Ian Chambers, Italy
The legal obligations of health professionals – hunger
strikes and the law
Malke Borow, Israel
Immigration policies for the schools
Luciano Chiappetta, Italy
Hunger strikers in detention - the Israeli experience
Tami Karni, Israel
BIOETHICS EDUCATION (2)
Hall J
Co-Chairs: Mitsuyasu Kurosu, Robyn Fellingham
Questions and discussion
Bioethics education in clinical research with model
tool
Arja Halkoaho, Finland
CIRB (INTER-UNIVERSITIES CENTER
Hall B
FOR RESEARCH ON BOETHICS) WORKSHOP (1)
PLURALITY OF IDENTITIES
Co-Chairs: Paolo Valerio, Anna Maria Colau
Teaching bioethics via the production of studentgenerated videos
Chris Willmott, UK
Bioethics and occupational safety in gender’s studies
Isotta Burlin, Italy
Movies and drama related to bioethics in Japan
Mitsuyasu Kurosu, Japan
Puberty blocking during developmental years: issues
and dilemmas for gender variant adolescents
Paolo Valerio, Italy
Humanising medical ethics: reflections on a bioethics
OSCE in a South African medical school
Robyn Fellingham, South Africa
Disorders of sex development: the frontiers in a
scientific, bioethical and social debate
Francesca Dicé, Italy
Attitudes of Lithuanian teachers give notice about a
ban of abortions
Grita Skujiene, Lithuania
Homophobia and criminal law
Gianluca Gentile, Italy
Heteronormativity, homophobia and transphobia in sport
Cristiano Scandurra, Italy
Tuesday, November 19, 2013
Marriage in Italy between persons of the same sex
Alessia Schisano, Italy
Pluralities of identities, gender issues and sexual
orientation: between bioethics and bio-law - an
interdisciplinary reflection
Alberto Postigliola, Italy
SIOF NATIONAL CONGRESS ON FORENSIC
Hall C
DENTISTRY WORKSHOP (3)
THE ROLE OF GUIDELINE IN DENTISTRY AND CHILD
ABUSE
Co-Chairs: C. Buccelli, G. Cerretti, M. Niola
Guidelines between the protection of the patient’s
health and economic constraints
Alessandro Dell’Erba, Italy
The value of the guidelines and juridical interpretation
to protect the patient
Paola Frati, Italy
Child abuse: evaluation and general aspects
Francesco Introna & Valeria Santoro, Italy
17
9
The psychiatrist’s role in the dilemmas arising from
the relationship between euthanasia and depression
particularly in Holocaust survivors
Marnina Swartz-Vanetik, Israel
Developing new/reformed psychiatric services - what
should be the primary target?
Muli Linder, Israel
Methylphenidate for cognitive enhancement; myths
and facts
Nurit Shlafman, Israel
BIOETHICS GENERAL (3)
Co-Chairs: Jan Hartman, Carmen Pennacchio
Hall F
Communicating bioethics within family context
Pasquale Giustiniani, Italy
Tobacco control policy in the EU: protecting public
health in the free market
Iris Goldner Lang, Croatia
Medicus amicus: professional ethics in the ancient world
Carmen Pennacchio, Italy
Dental caries in children: sign of abuse by neglect?
Aniello Ingenito & Pierpaolo Di Lorenzo, Italy
Role of guidelines in dentistry and treatment of child:
The traumatology of the child - from the event to
follow up
Enrico Spinas, Italy
GENETICS (3)
Hall D
Co-Chairs: Gabriele Werner-Felmayer, Caroline Guibet Lafaye
Visualizing bioethical issues of personal genomics
through arts
Gabriele Werner-Felmayer, Austria
Information on risk genes for breast cancer in a
population, to inform or not to inform individuals at risk
Jon Snaedal, Iceland
Ethical approach and professional responsibility in
workplace drug testing
Renata Borriello, Italy
Ethical and social issues raised by recent research in
epigenetics
Caroline Guibet Lafaye, France
Bioethics and its claims for competency
Jan Hartman, Poland
ETHICS GENERAL (3)
Co-Chairs: Jos Kole, Liljana Siljanovska
Hall G
Youth work and ethical reflection: stimulating
interprofessional ethical reflection
Jos Kole, The Netherlands
Ethics and evolution
Peter Lachmann, UK
Media ethics - principles and practices in Macedonian
journalism
Liljana Siljanovska, Macedonia
MEDICAL ETHICS (3)
Co-Chairs: Jaroslav Blahos, Svetlana Dimitrova
Hall H
Patients’ expectations of the medical profession - new
challenges
Iveta Barchovska, Bulgaria
Evidence, experience and ethics-based medicine
Jaroslav Blahos, Czech Republic
Why justice is good for African health care: first steps
towards an African theory of health care justice
Samuel J. Ujewe, UK
The Balint method practising in Bulgaria
Svetlana Dimitrova, Bulgaria
WPA SECTION ON PSYCHIATRY,
LAW AND ETHICS (3)
Co-Chairs: Tal Bergman-Levy, Rael Strous
Medical ethics: a guarantee of impartiality versus
conflict of interest
Cristoforo Ricci, Italy
Hall E
Specific ethical codes for mental health care
professionals - do we need to annotate?
Tal Bergman-Levy, Israel
Attitude, practice of clinical physicians in Vietnam on
medical professionalism
Tran Thi Thanh Huong, Vietnam
Patient rights in mental-health care facilities: an
empirical study of the phenomenon
Rael Strous, Israel
INTERCULTURAL BIOETHICS & LIFELONG
Hall I
LEARNING WORKSHOP (2)
BIOETHICS, LIFELONG LEARNING & SOCIAL
INCLUSION – II
Co-Chairs: Luigia Melillo, Anna Maria Traversa
18
Tuesday, November 19, 2013
Respect for cultural diversity and pluralism
Joel Farcoz, Italy
Lifelong learning as an emerging right
Laris Gaiser, Italy
Policies of Naples municipality for the Lifelong Learning
and the migrants
Annamaria Palmieri, Italy
CIRB (INTER-UNIVERSITIES CENTER FOR
RESEARCH ON BOETHICS) WORKSHOP (2)
BEGINNING OF LIFE
Co-Chairs: Fabio Buzzi, Maria Luisa Di Pietro
9
Hall B
The intersection of the logics of filiation in the context
of beginning of life: a psychoanalytic approach
Maria Clelia Zurlo, Italy
BIOETHICS EDUCATION (3)
Hall J
Co-Chairs: Vina Vaswani, Maria de la Luz Casas
The human embryo between res and person inspired
from the legal debate of the ancient world
Osvaldo Sacchi, Italy
Positive attitude changes in bioethics students before
and after survey application
Maria de la Luz Casas, México
Bioethical issues at the beginning of life and female
citizenship
Emilia Taglialatela, Italy
The implications of bioethics education for developing
nations
S. Iniobong Udoidem, Nigeria
Political appreciation and judicial control in Italian law
on assisted reproduction technologies
Andrea Patroni Griffi, Italy
Introducing bioethics course in a medical university in
India for the first time - the challenges
Vina Vaswani, India
Parental responsibility and responsible parenthood:
some reflections about the instruments for the defense
of children reference to medically assisted procreation
in Italian law
Laura Tricomi, Italy
ETHICS KNOWLEDGE OF
Hall K
HEALTH CARE WORKERS
Co-Chairs: Dilara Mamedaliyeva, Maurizio Carnassale
Current level of knowledge, perception and practice
of medical law and ethics among Nigerian medical
practitioners: deficiencies and remedies - the Nigerian
model
Awawu Grace Nmadu, Nigeria
About nurses knowledge of medical deontology
Dilara Mamedaliyeva, Azerbaijan
The international code of ethics for occupational health
professionals: a guide for the physicians who work for
Italian Workers’ Compensation Authority
Maurizio Carnassale, Italy
16:30-17:00
Coffee break and poster session
17:00-18:30
Hall A
EUROPEAN SOCIETY FOR
CARDIOVASCULAR SURGERY WORKSHOP
BIOETHICAL ISUES IN CARDIOVASCULAR SURGERY:
NEW TECHNOLOGIES, NEW FRONTIERS, NEW RULES?
Co-Chairs: Domenico Palombo, Oto Oztekin
The need of ethical training for cardiovascular surgeons
Domenico Palombo, Italy
ECMO: limits and indications, a bioethical discussion
Oto Oztekin, Turkey
EVAR for abdominal aortic aneurysm in elderly patients:
bioethical issues
Lazar Davidovic, Serbia
Peripheral arteriopaty and diabetic patients in
endovascular era: is it bioethically worthwhile?
Giancarlo Bracale, Italy
SIOF NATIONAL CONGRESS ON
FORENSIC DENTISTRY WORKSHOP (4)
Hall C
Discussion
Election of SIOF President and Assembly
ABORTION
Co-Chairs: Laura Andrissi, Sara Dejevsarov
Hall D
Cultural differences and the intention to undergo an
elective abortion in case of a fetal abnormality
Sara Dejevsarov, Israel
Immigrant women from sub-Saharan Africa in Italy: a
survey on the phenomenon of induced early abortion
during their irregular staying: epidemiological,
anthropological and ethical aspects
Laura Andrissi, Italy
The human embryo
David ern , Czech Republic
Woman’s right to abort a viable fetus
Pnina Lifshitz-Aviram, Israel
WPA SECTION ON PSYCHIATRY,
Hall E
LAW AND ETHICS (4)
Co-Chairs: Asima Mehboob Khan, Gisela Badura-Lotter
Mental disorder and incapacity to make healthcare
decisions
Claire Rommelaere & Albert Fox, Belgium
Assessment of parenting competence in individuals
with mental illness and the role of a new kind of legal
guardianship in Italy
Linda Alfano, Italy
The professional discourse on desire for children and
parenthood in mental health service users in Germany
- reflections of the past on actual ethical challenges
Gisela Badura-Lotter, Germany
Tuesday, November 19, 2013
“Mind” and health - an awareness program for media
Asima Mehboob Khan, Pakistan
BIOETHICS GENERAL (4)
Co-Chairs: Éloïse Gennet, Samual A. Garner
Defining an interdisciplinary research methodology
linking legal, normative and empirical ethics
Éloïse Gennet, Switzerland
An introduction to animal research ethics
Samual A. Garner, USA
Conscience and bioethics: what if everybody were
objectors?
Michele Saporiti, Italy
Parental conflict separation as an early traumatic event
for child
Maria Giuseppina Mantione & Alessandra Muscetta, Italy
Pathology in the parental relationship: the good praxis
for evaluation of parental capabilities
Elisa Spizzichino, Italy
To preserve the children from parental conflict and
divorce by application of juridical and clinical
instruments
Adriana Mazzucchelli, Italy
Conditions and limits of protective measures involving
child’s removal from primary attachment figures:
psychological and ethical aspects
Tiziana Frau & Sabina Gorcelli, Italy
Hall G
BIOETHICS EDUCATION (4)
Co-Chairs: Sashka Popova, Siti Pariani
Giving them their voices back: a media project offers
a floor for the vulnerable
Ralf Stutzki, Switzerland
Dictatorships reflect societal faultlines
Digvijay Singh Goel, New Zealand
Law students as agents of social change - moral values
and attitudes in Zefat College School of Law
Yael Efron, Israel
Bioethics and autism: securing the moral compass of
children with autism in developing countries
Mona Indargiri, USA
The assessment of medical professionalism among new
paramedical staff under post-graduate training
program
Chiung-hsuan Chiu, Taiwan
MEDICAL ETHICS (4)
Co-Chairs: Zafrira Hillel-Diamant, Josef Ku
The childhood trauma in the breakdown of family
relationship: clinical and bioethical aspects
Angelo Maria Inverso, Italy
Hall F
Bioethics and compulsory hospitalization: the evolution
of crack in São Paulo, Brazil
Ruy de Mathis, Brazil
ETHICS GENERAL (4)
Co-Chairs: Ralf Stutzki, Yael Efron
19
9
Hall H
Hall J
Bioethics education in a South African university of
technology - a multidimensional best practice approach
Willem A. Hoffmann, South Africa
How to learn bioethic in school of medicine (bioethic
education)
Siti Pariani, Indonesia
Working towards a culture of collaboration in medical
schools
Sashka Popova, Bulgaria
BIOETHICS AND RELIGION
Co-Chairs: Annie Reiss, Diana Aurenque
Hall K
Bioethics between science and religion
Flora Strozenberg & Edna Raquel Hogeman, Brazil
Jewish perspectives on distributive justice and economic
considerations in medical care
Annie Reiss, Israel
Does a child on chronic ventilation have the right to
demand home care?
Zafrira Hillel-Diamant, Israel
The new law on religious circumcision in Germany and
its legal, ethical and political debate
Diana Aurenque, Germany
Understanding of euthanasia by medical students
Josef Ku , Czech Republic
Christian anthropology vs. the new anthropology and
the quest for human perfection
Tomasz Kraj, Poland
Pictorial art as alternative way of communication: a
case report in a patient with Alzheimer Disease
Marina Tullii, Italy
Scientometrical studies on hot topics and research
structures of Chinese medical ethics in recent 20 years
Yanhua Lv, China
CHILD PSYCHIATRY WORKSHOP
Hall I
THE CHILDHOOD TRAUMA IN THE BREAKDOWN OF
FAMILY RELATIONSHIP: CLINICAL AND BIOETHICAL
ASPECTS
Co-Chairs: Angelo Maria Inverso, Fabio Canziani
Coping with religious pluralism in public bioethics
discourse
Chris Durante, USA
20
Wednesday, November 20, 2013
09:00-10:30
Hall A
AOGOI WORKSHOP (1)
ETHICAL DIMENSIONS OF OBSTETRICS & GYNECOLOGY – I
Co-Chairs: Vito Trojano, Antonio G. Spagnolo
9
Is there autonomy of the will for mentally ill patients?
What are the roles for patients, family, physicians and
legal authorities? Brazilian solutions and perspectives
Washington Fonseca, Brazil
A challenging future for ethical decision-making in
psychiatry
Magdaleen Swanepoel, South Africa
When does human life begin… endless
controversies?
Asim Kurjak, Croatia
BIOETHICS GENERAL (5)
Hall F
Co-Chairs: Morten Ebbe Juul Nielsen, Nenad Ceki
Is preimplantation genetic diagnosis ethical?
Giovanni Monni, Italy
Ethics an essential dimension of prenatal diagnosis
Domenico Arduini, Italy
Bioethics in the pharmaceutical industry? Concerns,
standards and a strategy for trustworthy reform
Jennifer E. Miller, USA
Planned home birth: an ethical challenge for the
developed world
Frank Chervenak, USA
A survey on the degree of knowledge of bioethics and
its application in health management
Annunziata Mazzitelli, Italy
BIOETHICS AND FILM: AUDIOVISUAL
Hall C
RESOURCES FOR TEACHING AND RESEARCH
Co-Chairs: Moty Benyakar, Juan Jorge Michel Fariña
Obesity and personal responsibility
Morten Ebbe Juul Nielsen, Denmark
Bioethical implications of globalisation and societies
in transition
Russell D’Souza, Australia
Cinema and television: developing subjective
dimensions to deal with bioethics
Moty Benyakar, Argentina
Bioethics in contemporary cinematic narratives
Andrea Hellemeyer, Colombia
The ethical condition of man: a music-oral reading of
the second chorus of Sophocles’ Antigone
Juan Jorge Michel Fariña, Argentina
INFORMED CONSENT (1)
Co-Chairs: Nicole Gallus, Tracey Elliott
Hall D
Free and informed consent to medical treatment and
vulnerable persons
Nicole Gallus, Belgium
From consent to choice: the ethical implications of
‘empowerment-centred healthcare’
Luca Chiapperino, Italy
Incompetent patient and therapeutic destiny
Alessandra De Gasperis, Italy
Factors influencing informed consent implementation
in health care service in Indonesia
Ivan Rahmatullah, Indonesia
Sacrificing proper practice on the altar of the beauty
business? Informed consent in the field of cosmetic dentistry
Tracey Elliott, UK
WPA SECTION ON PSYCHIATRY,
Hall E
LAW AND ETHICS (5)
Co-Chairs: Samuel Wolfman, Washington Fonseca
Non-consented ECT treatment for involuntary
hospitalized mentally ill patients
Samuel Wolfman, Israel
Psychiatric treatment consent and the support trustee:
from a new form of guardianship to the “cura
personae”
Diana Galletta, Italy
Metaethics and bioethics: “psychopath case”
Nenad Ceki , Serbia
RESEARCH ETHICS (1)
Co-Chairs: Hedva Eyal, Josep Corbella i Duch
Hall G
Regulation of medical experiments on human subjects:
the case of anthrax experiments in IDF
Hedva Eyal, Israel
Understanding why people refuse to participate in
research may strengthen mutual trust and ethical
standard in biomedical research...experiences from
following up refusals in Kilifi Health and Demographic
Surveillance System, Kenya
Francis Kombe, Kenya
Some ethical aspects in medical and clinical research
Rodica Feraru, Israel
Clinical ethics committees in Spain
Josep Corbella i Duch, Spain
The usage of bio-markers in clinical settings: ethical
reflections (observations?)
Antonio Leo, Italy
MEDICAL ETHICS (5)
Hall H
Co-Chairs: Rachel Nissanholtz-Gannot, Raffaella Rinaldi
The truth and the physician
Rachel Nissanholtz-Gannot, Israel
Ethical and clinical implications of interrupting
acetylcholinesterase inhibitor treatment in severe
Alzheimer’s
Raffaella Rinaldi, Italy
The biology of empathy and its role in good ethical
practice in healthcare delivery
Esther B. Patrick, Nigeria
Wednesday, November 20, 2013
Healthy lifestyle requirements; laudable or paternalistic
meddling
Lizette Schoeman, South Africa
21
9
10:30-11:00
Coffee break and poster session
11:00-12:30
Social media and medicine: legal and ethical
implications
Konstantinos Roditis, Greece
INTERCULTURAL BIOETHICS & LIFELONG
Hall I
LEARNING WORKSHOP (3)
BIOETHICS, MINORS & ADOLESCENTS: TEACHING
BIOETHICS AND METHODOLOGICAL PROPOSALS – I
Co-Chairs: Luciano Chiappetta, Miroslava Vasinova
Bioethics education in a multicultural society: Aosta
Valley Autonomous Region examples and suggestions
Anna Maria Traversa, Italy
The project “A healthy week!”
Claudio Todesco, Italy
Ethics problems and values transmission to prevent
premature childhood
Antonella Migliore, Italy
Principles of the education in bioethics and ecobioethics in medical schools and to the health´s
professionals in hospitals in São Paulo
Jose T. Thomé, Brazil
Bioethics education on vulnerable subjects and groups
Zoran Todorovi , Serbia
Emotional intelligence as methodology and didactic
tool in teaching bio-ethics at nursing schools: practical
steps
Daniella Keidar, Israel
A disability bioethics curriculum that encourages
reflection and open discussion among students and
community members
Julie Rogers, USA
Hall K
Judicial intervention in private health care policies in
Brazil
Daniela Ito, Brazil
Legal and ethical challenges in medical rescue
Xueqian Zheng, China
Legal protection of patients’ rights in China
Hong Le, China
Health protection between ethics and law
Michele Capasso, Italy
What is the role of fetal therapy?
Giuseppe Noia, Italy
Evolving ethical challenges of HIV in obstetrics &
gynecology
Pasquale Martinelli, Italy
Women and children first: an ethical challenge for the
developing world
Laurence McCullough, USA
Hall B
Hall J
Bioscience ethics education: challenging learning across
the generations with particular reference to human
reproductive biology
Irina Pollard, Australia
MEDICAL LAW (1)
Co-Chairs: Daniela Ito, Michele Capasso
Hall A
Cord blood banking public or private?
Antonio Chiàntera, Italy
NAPLES FEDERICO II UNIVERSITY ETHICS
COMMITTEE & CIRB WORKSHOP (1)
END OF LIFE – I
Co-Chairs: Lorenzo Chieffi, Giuseppe Lissa
Best practices of Campania URS
Ugo Bouchè, Italy
BIOETHICS EDUCATION (5)
Co-Chairs: Irina Pollard, Jose T. Thomé
AOGOI WORKSHOP (2)
ETHICAL DIMENSIONS OF OBSTETRICS &
GYNECOLOGY – II
Co-Chairs: Giovanni Scambia, Carmine Nappi
At the edge of consciousness: does neuroscience
revolutionize law at the end of life?
Valeria Marzocco, Italy
Technological delay of death
Rosalba Tufano, Italy
Disorders of consciousness and brain death: medical
and ethical considerations
Anna Estraneo, Italy
From cardiac death to brain death: how death is ascertained
Giuseppe Mastroroberto, Italy
The right to self-determination of terminally ill patients
through the interpretation of constitutional principles
Lorenzo Chieffi, Italy
Profiles of legal significance of advance directives for
medical treatment: experiences to comparison
Roberta Catalano, Italy
NAPLES FEDERICO II UNIVERSITY ETHICS
Hall C
COMMITTEE WORKSHOP (1)
CLINICAL TRIALS, DILEMMAS THERAPEUTIC, ETHICS
COMMITTEES
Co-Chairs: Carmine Donisi, Dario Sacchini
Contributions from the discussions held by the national
bioethics committee on scientific research and the role
of ethics committees in Italy
Pasquale Severino, Italy
Ethical committees in Europe
Emanuele Capasso, Italy
Insurance coverage in clinical trials in the experience
of the ethics committee for biomedical activities “Carlo
Romano”
Igino Amirante, Italy
22
Wednesday, November 20, 2013
9
The use of placebo in clinical trials: a matter still in
progress
Danila Faillace, Italy
The legitimacy of race as variable in the deliberations
of Institutional Review Boards (IRB’s)
Anton A. van Niekerk, South Africa
Light and shadow in the new Italian regulation on
ethics committees
Paola Buccelli, Italy
Clinical study with medical device in the Lecce ASL
Rossella Ileana Romano, Italy
INFORMED CONSENT (2)
Co-Chairs: Adam Dolezal, Rima Nakkash
Hall D
Protection of human subjects: introducing the Research
Participant and Family Advocate (RPFA)
Tomas J. Silber, USA
Informed consent in Czech Republic and Slovak Republic
- ethical and legal issues
Adam Dolezal, Czech Republic
Is it ethically justifiable to involve children in nontherapeutic research?
Domnita Oana B d r u, Switzerland
Informed consent, autonomy and compensation in
the twenty-first century - a call for a new approach
Nili Karako-Eyal, Israel
MEDICAL ETHICS (6)
Co-Chairs: Altin Stafa, Juan Bar el
Practices of obtaining informed consent in Lebanon
and Qatar: a disconnect between standards and practice
Rima Nakkash, Lebanon
Is consent truly informed? The readability scores of
information and consent forms for cancer clinical trials
and research in Italy
Laura McMahon, Italy
Hall H
Physician-patient communication during the
endovascular and percutaneous therapeutic procedures:
some personal considerations based on a personal
experience in an interventional radiologyneuroradiology clinical context
Altin Stafa, Italy
Ethical aspects of the treatment of people belonging
to mythical cults
Juan Bar el, Israel
BIOETHICS TRAINING IN INDIAN MEDICAL
Hall E
EDUCATION
Co-Chairs: Mushtaq Margoob, Russell D’Souza, Rizwan Taj
Nothing is what it seems - prenatal diagnosis in Poland
Weronika Chanska, Poland
Bioethics applied from the Islamic religion
Rizwan Taj, Pakistan
When can a family physician refuse to treat a patient?
Yisrael Katz, Israel
Bioethics training in medical education in India current
requirements
Mary Mathew, India
Assessment of ethics courses in professional ethics
education
Mariette van den Hoven, The Netherlands
Developing bioethics curriculum in medical education
in India - current practice
Princy Palaty, India
INTERCULTURAL BIOETHICS & LIFELONG
Hall I
LEARNING WORKSHOP (4)
BIOETHICS, MINORS & ADOLESCENTS: TEACHING
BIOETHICS AND METHODOLOGICAL PROPOSALS – II
Co-Chairs: Luciano Chiappetta, Miroslava Vasinova
Globalisation and bioethics education and training in
India
Dinesh Narayanan, India
BIOETHICS GENERAL (6)
Hall F
Co-Chairs: Tatyana A. Sidorova, Susanna H. Davtyan
Aspects of normativity in bioethics
Tatyana A. Sidorova, Russia
CIRED actions: study cases
Giuseppina Iommelli, Italy
Understanding the social “fragility”
Antonio Esposito, Italy
The development of bioethics thinking skills
Luigia Melillo, Italy
Principles of responsibility and precautionary in the
use of antibiotics and anabolic in cattle: a Colombian
experience
Gina Lorena García, Colombia
Legal aspects in educational processes: de iure condito
and de iure condendo
Agata Bonaudo, Italy
The fifteen year experience of the bioethical committee
for veterinary medicine
Pasqualino Santori, Italy
BIOETHICS EDUCATION (6)
Hall J
Co-Chairs: Mohammad Baharuddin, Silviya AleksandrovaYankulovska
Bioethics, word curing and music therapy
Susanna H. Davtyan, Armenia
Overview learning implementation of bioethics of
midwifery education in Indonesia
Mohammad Baharuddin, Indonesia
RESEARCH ETHICS (2)
Hall G
Co-Chairs: Anton A. van Niekerk, Tomas J. Silber
Knowledge, attitudes and practices of nursing ethics
medical students in Mali
Samba Diop, Mali
Wednesday, November 20, 2013
23
9
Current situation and issues of continuing ethics
education in nursing
Yuko Hamajima, Japan
The right to self-determination and end-of-life
decisions: the role of the fiduciary
Barbara Salvatore, Italy
Obstacles to effective ethics education of medical
professionals in Bulgaria
Silviya Aleksandrova-Yankulovska, Bulgaria
Living will: problematic profiles
Carlo Venditti, Italy
Mutual learning to overcome the risk of self-referencing
in health professions
Antonio Del Puente, Italy
MEDICAL LAW (2)
Co-Chairs: Kim Hwee Koh, Lucy A. Knouse
Living will according to the Italian Acts
Rosa Guarino, Italy
Right not to suffer and the analgesic therapies
Daniela Minutelli, Italy
Hall K
The spiritual assistance
Adolfo Russo, Italy
Ethics and regulation of aesthetic medicine - a
Singapore experience
Kim Hwee Koh, Singapore
Right for health protection in CIS countries constitutions
Fatima Aliyeva, Azerbaijan
NAPLES FEDERICO II UNIVERSITY ETHICS
Hall C
COMMITTEE WORKSHOP (2)
CLINICAL TRIALS, DILEMMAS THERAPEUTIC, ETHICS
COMMITTEES
Co-Chairs: Guido Rossi, Antonio Lepre
Development of health bill in Kenya: challenges and
lessons learnt
Lucy Musyoka, Kenya
Ethical implications of the collection of biological
material and relevant information
Mimmo de Cristofaro, Italy
Health law and its impact on defensive medicine
Lucy A. Knouse, USA
Is there an ethical ground for derogating from
individual integrity principles in favour of scientific
progress in clinical trials?
Claudio Buccelli, Italy
Patients’ rights as an indicator of health system
development
Fidan Rustamova, Azerbaijan
12:30-13:30
Optional lunch break
An opinion of EC “Carlo Romano” on continuation of
treatment in an anencephalic newborn
Ida Cerrone, Italy
13:30-15:00
NAPLES FEDERICO II UNIVERSITY ETHICS
COMMITTEE WORKSHOP (1)
ORGAN TRANSPLANTATION
Co-Chairs: Enrico Di Salvo, Roberto Catanesi
Hall A
Futile trials: ethical issues
Massimo Niola, Italy
Analyzing donation in XXI century: toward new
frontiers
Alessandro Nanni Costa, Italy
Opt-out organ procurement policies and good
communities: arguments to improve procurement
James L. Nelson, USA
Organ procurement: Spanish transplant procurement
management
Vincent Torregrossa, Spain
Harvesting cadaveric tissues for therapeutic
transplantation after judicial autopsy: the primacy of
ethics in a climate of regulatory uncertainty
Carlo Vosa, Italy
FEDERICO II NAPLES UNIVERSITY ETHICS
COMMITTEE & CIRB WORKSHOP (2)
END OF LIFE – II
Co-Chairs: Franco Contaldo, Franco Rengo
An opinion of the EC “Carlo Romano” on continuation
of therapy in a newborn with a rare disease
Maria Antonietta Zinno, Italy
INFORMED CONSENT (3)
Co-Chairs: Deirdre Madden, Vered Windman
Hall D
Medical treatment of children and parental consent
in Ireland
Deirdre Madden, Ireland
Medical treatment of minors: child and family
autonomy and state intervention
Vered Windman, Israel
Patient’s right to informed consent in Republic Srpska:
legal and ethical aspects (with special reference to the
physical rehabilitation process)
Igor Milinkovi , Bosnia and Herzegovina
A narrative model for informed consent with youth
Michelle A. Mullen, Canada
Hall B
Advance health care directives: the living will between
self-determination of the person and physician
autonomy
Pietro Tarsitano, Italy
A call for consensus if the aim is protection: review of
vulnerability in research
Daima Bukini, Tanzania
CULTURALLY RELEVANT BIOETHICS FOR
Hall E
ASIA PACIFIC
Co-Chairs: Mary Mathew, Russell D’Souza, Anu kant Mittal
24
Wednesday, November 20, 2013
The need to develop cultural relevant bioethics for
Asia
D. Balakrishnan, India
Bioethics from the Vedic tradition times application
to Asia
Manu Mittal, India
Novel methods in bioethics education in medical schools
Anu kant Mittal, India
Role of ethics committee in Kashmir University
Arshad Hussein, India
BIOETHICS GENERAL (7)
Hall F
Co-Chairs: Magda Slabbert, Anastasia Zakariadze
The dead teaching the living, Von Hagens Body Worlds
- art, entertainment, education or a violation of human
dignity?
Magda Slabbert, South Africa
9
Regional differences in cancer survival of patients:
ethical problems of health policy and clinical
governance
Rosalba Caldarazzo, Italy
Doing right for patients: a grounded theory on
physicians’ understanding and negotiation of ethical
dilemmas
Rhodora C. Estacio, Philippines
Whistleblow while you work: is it ethically acceptable
for doctors to use the media as a means for ‘blowing
the whistle’?
Chantal Cox-George, UK
INTERCULTURAL BIOETHICS & LIFELONG
LEARNING WORKSHOP (5)
DNA & INTERCULTURAL IDENTITY
Co-Chairs: Cinzia Caporale, Giacomo Sado
Hall I
The public perception of neuroscience
Agnes Allansdottir, Italy
Institute of bioethics clinical ethics consultation of
Università Cattolica: analysis of an experience
Dario Sacchini, Italy
Mind as an emergent property
Pietro Calissano, Italy
Violating dignity by offering organs for sale? A critical
evaluation of dignity in the current debate
Zümrüt Alpinar, Switzerland
Genomic studies and ethical issues in the China of the
third millennium
Daniela Caruso, Italy
Bioethical dilemmas in front of the challenges of
contemporary world-teaching, learning, research (TSU
experience)
Anastasia Zakariadze, Georgia
Perspectives of medicine and genomic-omics
Giuseppe Novelli, Italy
From bioethics to neuroethics
Elisabetta Sirgiovanni, Italy
Demand for circumcision of males is on the increase
in Italy: ethics problems
Maria Gloria de Bernardo, Italy
ETHICAL DECISION MAKING
Co-Chairs: Donrich Jordaan, Patrick Schuchter
RESEARCH ETHICS (3)
Co-Chairs: Guy Enosh, Daniel Fu-Chang Tsai
Intuition in clinical reasoning
Laura Leondina Campanozzi, Italy
Hall G
Hall J
Power relations in research encounters: implications
for ethics in research
Guy Enosh, Israel
The regulation of surrogate motherhood in South Africa:
a human rights analysis of the genetic link requirement
Donrich Jordaan, South Africa
Ethical considerations in racial inclusion for clinical
research
Glenn Ellis, USA
A pluralistic, multi-methodological model in clinical
ethics
Evyatar Shayevitz, Israel
Maximum risk standard in biomedical research
Joanna Rozynska, Poland
Evaluation of training activities in the field of ethics
and health communication in Albania
Adrian Hoxha, Albania
The moral obligation to participate in medical research
Daniel Fu-Chang Tsai, Taiwan
About patients, “inventors”, journalists, scientists and
IRBs (to say nothing of the institutions): CCSVI and MS
Antonella Piga, Italy
MEDICAL ETHICS (7)
Co-Chairs: Ahmad Ayesha, Patricia Oliveira
Organizing spaces for everyday ethical reflection - a
narrative approach in clinical ethics consultation
Patrick Schuchter, Austria
MEDICAL LAW (3)
Hall K
Co-Chairs: Tiziana Maria Devoti, Adila Abasova
Hall H
Rape - a terminal condition of trauma: why palliative
care is a better approach than psychiatry
Ahmad Ayesha, UK
Disruptive effects in patients with burn aftereffects
Patricia Oliveira, Argentina
On the urgent need to codify international bioethics
law and to form a unified and specialized systems of
international and national bioethical courts
Victoria Tretiakova, Ukraine
International legal protection of child’s medical rights
and bioethical issues
Aytan Mustafayeva, Azerbaijan
Wednesday, November 20, 2013
How development of the international bioethical
legislation influences on Azerbaijan laws
Adila Abasova, Azerbaijan
Pharmacists-promoters of good health: new profile of
professional responsibility
Tiziana Maria Devoti, Italy
15:00-16:30
NAPLES FEDERICO II UNIVERSITY ETHICS
COMMITTEE WORKSHOP (2)
ORGAN TRANSPLANTATION
Co-Chairs: Enrico Di Salvo, Roberto Catanesi
Hall A
More professionals in ethics committees
Carlalberto Leone, Italy
Ethics committee opinion on a case of surgery in autistic
child
Loriana Paciello, Italy
Information and consent, analysis of the exhaustiveness
of communication and adequacy of information in
biomedical trials with the participations of the expert
in psychology
Adriana Scuotto, Italy
Informed consent, the role of psychologists as
communication experts
Arianna Iorio, Italy
Ethical issues in the transplantation of uterus
Fabio Policino, Italy
Sharing opinion and participative research: from people
expectations to independent information in organ
donation either in hospital than in territorial services
Elena Giancotti, Italy
Organisational determinants in procurement and
transplantation pathway: from evidence review to
organizational toolbox
Fabiana Rubba, Italy
Sociological model of donation
Giulia Mancini, Italy
FEDERICO II NAPLES UNIVERSITY ETHICS
COMMITTEE & CIRB WORKSHOP (3)
END OF LIFE – III
Co-Chairs: Paola Izzo, Mario Di Luca Natale
25
9
Hall B
End of life care and risk of overtreatments: an
introduction
Franco Contaldo, Italy
Theological reflection on pain and suffering
Ignazio Schinella, Italy
An ethics of responsibility for managing end-of-life
processes
Giuseppe Lissa, Italy
Therapeutic obstinacy: notes for an analysis of endof-life bioethical issues
Emilia D’Antuono, Italy
The life-prolonging measures (aggressive treatment)
in legislation of foreign countries
Francesco Catapano, Italy
Therapeutic obstinacy
Alfredo Marinelli, Italy
Legal aspects of “therapeutic obstinacy”
Donisi Carmine, Italy
The damage of therapeutic fury
Casella Claudia, Italy
NAPLES FEDERICO II UNIVERSITY ETHICS
Hall C
COMMITTEE WORKSHOP (3)
CLINICAL TRIALS, DILEMMAS THERAPEUTIC, ETHICS
COMMITTEES
Co-Chairs: Antonio Lepre, Dario Sacchini
INFORMED CONSENT (4)
Co-Chairs: Daniel Sperling, Carlo Pasetti
Hall D
Physician financial and organizational interests: the
revised legal doctrine of informed consent and bioethics
Daniel Sperling, Israel
The role of informed consent in assisted reproductive
technologies
Faiza K. Aliyeva, Azerbaijan
Information, awareness, decision-making: observational
study of clinical ethics applied to progressive chronic
diseases
Carlo Pasetti, Italy
“Off label” medical treatments in neuro-cognitive
disorders: competency of the patient and validity of
informed consent
Felice Carabellese, Italy
THE ROLE OF BIOETHICS IN MEDICAL
EDUCATION IN ASIA
Co-Chairs: Russell D’Souza, Tran Huong
Hall E
The call of the Davui: heralding an era of change for
the Pacific
Sharon Biribo, Fiji
Conflict of interest between the institutional goals for
advancement of knowledge and institutional ethics issues and solutions
P. Thangaraju, India
Bioethics curriculum in medical education in Indonesia
Sajid Darmadipura, Indonesia
BIOETHICS GENERAL (8)
Hall F
Co-Chairs: Irada Huseynova, Ahmed Binsumeit Khitamy
Badawy
Resolutions of regional and biopolitical issues in
situation of historical and cultural diversity in the
Caucasus
Irada Huseynova, Azerbaijan
Bioethics in the system of fundamental universal human
and national values
Nigar Kalandarli, Azerbaijan
26
Wednesday, November 20, 2013
The Omani National Committee for Bioethics: making
regulations and drawing up legislation, with special
reference to embryonic stem cell research and end of
life issues
Ahmed Binsumeit Khitamy Badawy, Oman
The European partnership
Barbara Ciampella, Italy
The truth and meaning of the human embryo’s life:
from ancient Greece to the contemporary bioethical
debate
Emilia D’Antuono, Italy
Prevalence of speech language communication
difficulties in Italian young offenders
Anna Giulia De Cagno, Italy
Healthcare professionals well-being at work: the case
of an Italian region
Giuseppe Villani, Italy
RESEARCH ETHICS (4)
Co-Chairs: Charles Weijer, Tapani Keränen
Hall G
9
The use of the screening tool in Italy
Simona Silvestro, Italy
Recommendations for speech and language therapy
in the juvenile justice
Tiziana Rossetto, Italy
RISK MANAGEMENT AND QUALITY
Hall J
Co-Chairs: Helen Malka-Zeevi, Pablo Simón-Lorda
Ethical issues in cluster randomized trials in health
research: an overview and implications for education
of researchers and research ethics committees
Charles Weijer, Canada
Clinical risk management and medical and legal sides
in the implementation of the telemedicine on more
than one medical facility in the transfusion medicine
service of the Rome B Local Health Unit
Giancarlo Carbone, Italy
Placebo controlled clinical trials: how rationale for the
use of placebo is justified
Tapani Keränen, Finland
Can ethical evaluation be an alternative way of
preventing medical errors?
Andreas A. Prokopiou, Cyprus
Ethical issues identified in research proposals reviewed
by the school of health sciences research committee
Numa Vera, Fiji
Raising the awareness of error reporting as part of
organizational culture and patient safety
Helen Malka-Zeevi, Israel
Not a dead giveaway: human remains and the
researcher’s responsibilities
Mark Spigelman, Israel
Content of syllabi of “public health ethics” courses in
accredited U.S. programs and schools of public health
Pablo Simón-Lorda, Spain
The ethics of research in palliative care in an HIV
homeless community in South Africa
Therese Maarschalk, South Africa
MULTICULTURALISM (1)
Hall K
Co-Chairs: Aline Albuquerque, Maria Teresa Tassinari
MEDICAL ETHICS (8)
Co-Chairs: Marek Czarkowski, Jining Li
Hall H
Hospital ethics committees in Poland - first attempts
Marek Czarkowski, Poland
Development of ethical committees in the Chinese
hospitals and protection for the patient’s rights
Jining Li, China
Ethical aspects in treating diabetes mellitus
Agung Pranoto, Indonesia
Professional interpersonal relationships involving
physicians - Croatian perspective
Marko urkovi , Croatia
Conscientious objection in emergency contraception:
is it (a) right?
Costantino Ciallella, Italy
ITALIAN FEDERATION OF SPEECH
Hall I
THERAPISTS WORKSHOP (1)
YOUTH OFFENDING AND SPEECH AND LANGUAGE
THERAPY (YOSALT)
Co-Chairs: Tiziana Rossetto, Giuseppe De Michele
The YOSALT Project
Raffaella Citro, Italy
Intercultural bioethics: the use of human rights tools
for conflict solution
Aline Albuquerque, Brazil
Individual counseling as efficacious strategy for
eradication of Female Genital Mutilation (FGM) in
immigrant women living in South Italy
Luciano Gualdieri, Italy
“Umuntu ngumuntu ngabantu”: an Afrocentric
approach to bioethics
Tambu Muoni, Jersey
The person: medicine’s end, not means - analysis from
a salutogenic perspective
Maria Teresa Tassinari, Italy
“Living in a shell of something I’m not”: transsexuality
and bioethics viewed from the Jewish-Christian
perspective
Mathias Wirth, Germany
16:30-17:00
Coffee break and poster session
Wednesday, November 20, 2013
17:00-18:30
Hall A
SIOT COMMISSION FOR VOLUNTARY
ACTIVITIES AND INTERNATIONAL COOPERATION
WORKSHOP
INTERNATIONAL COOPERATION
Co-Chairs: Maurizio Piazza, Elio Sena
International cooperation in emergency situation
Maurizio Piazza, Italy
Ethics and surgical care in mid-term development
program income countries: paradigm shift
Marco Foletti, Italy
OPBG clinical & surgical services in developing countries
Lorenzo Borghese, Italy
Ethics and empathy in the therapeutics relationship
Elio Sena, Italy
Commission for volunteering and international
cooperation
Michele Saccomanno, Italy
NAPLES FEDERICO II UNIVERSITY ETHICS
COMMITTEE & CIRB WORKSHOP (4)
END OF LIFE – IV
Co-Chairs: Agata Bonaudo, Sabino De Placido
Hall B
Futile treatment in neonatology
Roberto Paludetto, Italy
Extraordinary life-saving measures in ICU
Antonio Corcione, Italy
Therapeutic obstinacy in geriatrics
Franco Rengo, Italy
27
9
Bioethical aspects in the health care of refugees during
the 2011-2012 immigration emergency in Southern
Mediterranean
Antonio Tuccillo, Italy
BIOETHICS AND THE LAW
Co-Chairs: Radmyla Hrevtsova, Chongqi Wu
Hall D
Conscientious objection, law and bioethics: the right
to disobey law based on moral, religious or
philosophical convictions and its interface with bioethics
Selma Aparecida Cesarin, Brazil
The interplay of bioethics and health law: global and
local dimensions
Radmyla Hrevtsova, Ukraine
Bioethical regulation in a pluralistic society
Pawel Luków, Poland
Initiate thinking on joint development of bioethics
and disciplinary building of health law
Chongqi Wu, China
Legal status of embryo in the context of stem cell research
Vinko Galiot, Croatia
PUBLIC HEALTH
Hall E
Co-Chairs: Milica Prostran, Marie-Geneviève Pinsart
Public role of the medical profession in the changing
world
Iva Miteva, Bulgaria
Compulsory and recommended vaccines in
development age: the importance of voluntary assent
Rosagemma Ciliberti, Italy
The dilemmas of the trial patients with end-stage
Mario Giuliano, Italy
Child’s vaccination refusal by parents: an event
changing the face of the power
Marie-Geneviève Pinsart, Belgium
Psychological support to the family in the “life-end”
Valentina Battimiello, Italy
A human rights’ conscience in public health
Jane Wathuta, Italy
The management of the emotional stress of parents
in paediatric oncology
Fabio Borrometi, Italy
Is networking the key for improving the situation of
patients with rare diseases in Serbia?
Milica Prostran, Serbia
End of life-care: economics and management aspects
Giovanni Persico, Italy
ORGAN TRANSPLANT, ETHICS AND
THE LAW
Co-Chairs: Agata Bonaudo, Eliezer I. Klainman
About the choices between “home care” and “hospice”
Carlo Musella, Italy
NAPLES FEDERICO II UNIVERSITY ETHICS
Hall C
COMMITTEE WORKSHOP (4)
ETHICAL PROBLEMS THE TASK OF AID TO THE PEOPLE
IN EMERGENCY SITUATION
Chair: Luigi Saccà
Humanitarian aid and medical emergency response
relief in international disasters: recovery of medical
paternalism vs. diffusion of patient autonomy
Fabio Ciciliano, Italy
Proposal for the realization of a European civil
protection module for the forensic pathology and
disaster victim identification
Laura Moscatello, Italy
Hall F
The analysis of the productization of organ
transportation in the angles of ethics and laws
Yunliang Chen, China
The principle of autonomy and the principle of justice
on organ transplantation
Melania Borgo, Italy
Transplantation of human organs: universal panacea
or one of the ways to save the life?
Nataliya Hnatush, Ukraine
Organ transplants - rational and ethic problems
Eliezer I. Klainman, Israel
Human organ transplantation in Singapore
John Y.H. Liow, Singapore
28
Wednesday, November 20, 2013
RESEARCH ETHICS (5)
Co-Chairs: Barry Poata Smith, Katherine Wade
Hall G
A discussion on ethical research in the humanities
analyzed by a Brazilian Research Ethics Committee
Deise Juliana Francisco, Brazil
When less is more: raising and challenging expectations
around indigenous research consultation in New
Zealand
Barry Poata Smith, New Zealand
Non-therapeutic research with neonates: challenges
from a European perspective
Katherine Wade, Ireland
Ethical committees’ role in the definition of priority
levels of care pathways: off label drugs use
Maria Rosaria Romano, Italy
MEDICAL ETHICS (9)
Co-Chairs: Nurbay Irmak, Debora De Bartolo
Hall H
Professional ethics in extreme circumstances:
responsibilities of attending physicians and healthcare
providers in hunger strikes
Nurbay Irmak, USA
Are there evidences for harm in tube feeding in patients
with advanced dementia?
Reuven Friedmann, Israel
The ethics enigma of the cancer pain in Italy: from
pharmacological therapy to the application of a method
of psycho-social care integrated
Debora De Bartolo, Italy
Woman’s right to refuse treatment during childbirth
Zuzana Candigliota, Czech Republic
ITALIAN FEDERATION OF SPEECH
Hall I
THERAPISTS WORKSHOP (2)
BIOETHICAL IMPLICATIONS IN THE CLINICAL PRACTICE
OF SPEECH AND LANGUAGE THERAPY: ACTIONS WITH
COMPLEX PATIENTS
Co-Chairs: Roberta Citro, Giuseppe De Michele
The action of the speech therapist and the conflict
about the right thing to do
Franca Balbo Mossetto, Italy
The role of speech and language therapist in senile
age communication: the importance of the ethics and
respect for the person
Marta De Mattia, Italy
Disorders of consciousness and awareness in severe
acquired brain injury: bioethics compare with speech
therapy
Angela Lucia Fogliato, Italy
Bioethics and pediatric palliative care: the contribution
of speech and language therapist
Alessandra Renzi, Italy
CONSTITUTIONAL LAW AND BIOETHICS
Co-Chairs: Roy G. Spece, Tomas Dolezal
Hall J
9
The U.S. Constitution and bioethics: mutual
illuminations
Roy G. Spece, USA
Ethical issues in international legal acts and
constitutional law of the Republic of Azerbaijan
Sona Kalandarli, Azerbaijan
Medical law under the Strasbourg influence: on a road
to ius communae?!
Tomas Dolezal, Czech Republic
MULTICULTURALISM (2)
Hall K
Co-Chairs: Eli Buchbinder, Osaretin James Odia
Self-determination in intervention with Arab battered
women in medical community clinics in Israel
Eli Buchbinder, Israel
The relation between law, religion, culture and medical
ethics in Nigeria
Osaretin James Odia, Nigeria
Psychological vulnerability in the Reception Centre for
Asylum Seekers (CARA) of Crotone, Italy
Erika Angeletti, Italy
Maternity and immigrant women
Elena Carovigno, Italy
Islam and palliative care
Kartina A. Choong, UK
Thursday, November 21, 2013
09:00-10:30
Hall A
INPS WORKSHOP
SOCIAL SECURITY MEDICINE AND BIOETHICS:
REFLECTIONS AND PERSPECTIVES
President: Massimo Piccioni
Co-Chairs: Stefano Castaldo, Vincenzo Rio
The relief of suffering in the history of medicine and
of the invalidity pension insurance: comparisons, ethical
considerations, disease and benefits
Vincenzo Martignetti, Italy
Bioethics and social security medicine resources: the
antinomy between ethics and economy, medical and
legal evaluation and regulatory harmonization
Andrea Cavalli, Italy
Gene therapy and neurotechnologies in neurological
patient: possible applications, prognostic implications
and bioethical considerations
Angelo Moroni, Italy
Psychiatric morbidity in the elderly: current therapy,
disability and ethical considerations
Nicola Di Matteo, Italy
Cancers, biological therapy and disability: prognostic
and ethical aspects
Onofrio De Lucia, Italy
FERRARA UNIVERSITY INTERDIPARTIMENTAL Hall B
CENTRE OF VICTIMOLOGY WORKSHOP (1)
IMMIGRATION, DIVERSITIES, VIOLENCE
Co-Chairs: Francesco Maria Avato, Rosa Maria Gaudio
The medical doctor and the clandestine people: the
Italian vision
Sara Chierici, Italy
A woman portrait based on the Code of Lekë Dukagjini,
the medieval Albanian customary law: a profane point
of view
Francesco Maria Avato, Italy
Slaves of their persecutors, prisoners of their own
body: when handicap becomes a business…
Miroslava Vasinova, Italy
Violence on “pretty women”: simulation or help
request?
Roberta Pollicino, Italy
Forensic investigation about “violence” against women
Salvatore Tarantino, Italy
NAPLES FEDERICO II UNIVERSITY ETHICS
Hall C
COMMITTEE WORKSHOP (5)
ETHICAL ASPECTS OF MODERN MEDICINE – I
Co-Chairs: Sabino De Placido, Rino Froldi
Anatomical specimens of human origin on display: die
and become a piece of art and rich
Sabato Romano, Italy
29
9
“Evidence-based medicine” and “good clinical practice”
in modern medicine: advantages or problems for the
patient?
Nunzia Cannovo, Italy
Teaching bioethics in medical schools
Domenico Del Forno, Italy
DEATH AND DYING (1)
Hall D
Co-Chairs: Davor Derencinovic, Silvana Cortese
Advance directives in Romanian medical and juridical
practice
Maria Aluas, Romania
Gypsy women perspectives on end of life decisions
and advance directives
Inés Maria Barrio Cantalejo, Spain
How would you like to die? Greek opinion leaders on
science, arts and politics reply. A Greek conception of
good death and the contemporary pathophysiology
of death
Konstantinos GI Vazouras, Greece
Criminal offense of assisted suicide - new laws and old
dilemmas
Davor Derencinovic, Croatia
The role of the family in end-of-life choices
Silvana Cortese, Italy
BIOETHICS GENERAL (9)
Co-Chairs: Ames Dhai, Paolo Benanti
Hall E
Developing policy for biobank research in South Africa:
the Wits human research ethics committee (medical)
approach
Ames Dhai, India
The ethics consultation: which role in biobanks
governance?
Luciana Caenazzo, Italy
Ethical paradigms for the evaluation of
neurotechnologies in human enhancement
Paolo Benanti, Italy
INAIL WORKSHOP (1)
Hall F
PROFESSIONAL RISKS – I
Co-Chairs: Vittorio Fineschi, Adriano Ossicini, Pietro Iacoviello
Bioethics and the centrality of the person: the correct
medicine approach retirement
Daniela Marchetti, Italy
The ethics of safety and biological monitoring of
workers
Maurizio Manno, Italy
INAIL and pathology work: an overall protection while
respecting the principle of humanization of medicine
Emanuela Turillazzi, Italy
The role of citizens in genetic research
Lucia Terracciano, Italy
The diagnostic requirements: the insurmountable limit
between clinical needs and medical-legal social security
Vincenzo Vecchione & Francesco Burlin, Italy
The role of international stakeholders in genetic research
Elia Meccariello, Italy
RESEARCH ETHICS (6)
Co-Chairs: Jihad Makhoul, Anna-Maija Pietilä
Hall G
30
Thursday, November 21, 2013
Protecting or policing? Researchers' views of IRB
challenges to their research
Jihad Makhoul, Lebanon
Do the patients participating in clinical trials understand
information about clinical trials?
Asta Cekanauskaite, Lithuania
Ethical principles in clinical research: views of the nurse
managers
Anna-Maija Pietilä, Finland
Lived experiences of research ethics chairs: embracing
the ethics creep
Retha Visagie, South Africa
Ethical analysis of the scientific research on animals:
the practice of the research ethics committee in the
Medical University of Sofia
Vihren Petkov, Bulgaria
Ethical and legal issues in the context of clinical research
using vulnerable populations in India
Sarojini Nadimpally, India
ENVIRONMENTAL BIOETHICS (1)
Co-Chairs: José Bicudo, Cécile Bensimon
Hall H
Public-private partnerships in the water sector: ethical
considerations raised by the marketization of water
Cécile Bensimon, Canada
Bioethical implications of the effect of benzene
exposure in respiratory functions of Kaduna refinery
plant workers and petroleum pump workers in Kaduna
State, Nigeria
Fatima Lami Ciroma, Nigeria
9
IPASVI ITALIAN PROFESSIONAL COLLEGES
Hall J
OF NURSES WORKSHOP (1)
NURSING ROLE, DECISION-MAKING AND
RESPONSIBILITY: MULTI-PROFESSIONALISM VERSUS
INDIVIDUALITY
Co-Chairs: Stefano Bazzana, Miriam Magri
Use of physical restraint in hospitals and nursing homes:
a multicentre cross-sectional study
Ermellina Zanetti, Italy
Narrative and the code of ethics: the “instruments”
for an ethic reflection on nursing practice
Paola Gobbi, Italy
Nurses and multicultural competence in nursing care:
descriptive survey in Italian Aosta Valley Health Agency
Guy Bertrand Aimé Tchagou Dago, Italy
Professional dignity in nursing implicates patient safety
for Italian nurses
Alessandro Stievano, Italy
A motivational intervention to improve personal and
professional being of nurses: a mixed methods study
Andrea Giordano, Italy
ISLAMIC BIOETHICS
Co-Chairs: Vardit Rispler-Chaim, Emad Gith
Hall K
Islamic medical ethics: the employment of advanced
technologies in gender issues
Vardit Rispler-Chaim, Israel
Assisted procreation and abortion in the country by
Muslims
Maria Anna Filosa, Italy
Development of a bioethics proposal to implement a
reurbanization project in the central area of the city
of São Paulo
José Bicudo, Brazil
The effect of attitudes and beliefs of Jewish and Muslim
mothers on the intention to integrate Down Syndrome
children in Society
Sivia Barnoy, Israel
The WHO definition of health: a critical reading
Marianna Nobile, Italy
Principles and issues in the evaluation of parental
competency in Israel’s Arab-Muslim community
Emad Gith, Israel
SALVATORE MAUGERI FONDATION
Hall I
WORKSHOP
COMMUNICATION IN REHABILITATION MEDICINE:
ETHICS AND RELATIONAL CONTROVERSIAL ISSUES
Co-Chairs: Ines Giorgi, Carlo Pasetti
In search of a balance between technology and
humanization in palliative care
Anna Giardini, Italy
ALS and decision making
Marcella Ottonello, Italy
10:30-11:00
Coffee break and poster session
11:00-12:30
FNOMCeO /NATIONAL FEDERATION OF
Hall A
ORDERS OF PHYSICIENS & DENTISTS/WORKSHOP (1)
MEDICAL DEONTOLOGY
Co-Chairs: Antonio D'Avanzo, Angelo Fiori
Ethics, bioethics and medical deontology
Aldo Pagni, Italy
Percutaneous endoscopic gastrostomy (PEG):
communicational, cultural and ethics aspects
Francesco Cupella, Italy
In time and space locked-in: families face
Historical development of medical deontological codes
in Italy
Sara Patuzzo, Italy
vegetative state
Marina Manera, Italy
New code of medical deontology in Italy
Roberta Chersevani, Italy
“Responsibility” construction
Ines Giorgi, Italy
New frontiers in medical deontology
Maurizio Benato, Italy
Thursday, November 21, 2013
FERRARA UNIVERSITY INTERDIPARTIMENTAL Hall B
CENTRE OF VICTIMOLOGY WORKSHOP (2)
IMMIGRATION, DIVERSITIES, VIOLENCE
Co-Chairs: Francesco Maria Avato, Guido Casaroli
Immigration between hospitality and criminal law
Guido Casaroli, Italy
The protection network about asylum seekers: the
social point of view in Italy
Antonio Banchini, Italy
Ethical values of a multicultural and multi-ethnical
society: Aosta Valley Region’s experience
Patrizia Scaglia, Italy
Ethics aspects on the mediation cross-cultural activities
in Aosta Valley Region
Fulvia Dematteis, Italy
NAPLES FEDERICO II UNIVERSITY ETHICS
Hall C
COMMITTEE WORKSHOP (6)
ETHICAL ASPECTS OF MODERN MEDICINE – II
Co-Chairs: Sabino De Placido, Rino Froldi
The cesarean section under maternal request: ethical
legal implications
Vincenzo Graziano, Italy
Ethical aspects of sham surgery
Francesco De Micco, Italy
When the urge to change the appearance of the body
touches the aberration: ethical limits in aesthetic
medicine
Mariano Paternoster, Italy
31
9
BIOETHICS GENERAL (10)
Hall E
Co-Chairs: Caue Cosme Dutra da Silva, Ayesha Irshad
Tattoos and piercings: bioethical and educational
profiles between nature and beauty
Carmela Bianco, Italy
Toxicological screenings in safety sensitive jobs:
balancing costs and benefits. Ethics of resources
Federica Bortolotti, Italy
The present and the future of molecular diagnostic
tests: there are ethical concerns?
Caue Cosme Dutra da Silva, Brazil
An analysis of reproductive genetic technology and
assisted reproduction with a focus on ethical, religious
and legal challenges in Pakistan
Ayesha Irshad, Austria
INAIL WORKSHOP (2)
Hall F
PROFESSIONAL RISKS – II
Co-Chairs: Vittorio Fineschi, Adriano Ossicini, Pietro Iacoviello
The professional responsibility of the medical-legal
evaluation process in social security: how to
homogenize technicality, training, law and ethics
Patrizio Rossi, Italy
Technical devices and interventions to support the life
of the relationship: the biopsychosocial approach to
the person with disabilities to work
Giovanni Cortese, Italy
Taking care of the person-injured worker through an
overall protection aimed at reintegration
Maria Rosaria Matarrese, Italy
Antiblastic drug manipulation in oncology departments:
environmental contamination levels, exposure risks,
formation/information role and possible consequences
for the sanitary personnel
Maria Pieri, Italy
The heritage statistical-information INAIL ethics as a
tool in the service of the society in respect of the
dignity of the person
Alessandro Salvati, Italy
DEATH AND DYING (2)
Co-Chairs: Esther-Lee Marcus, Ruth Horn
ENVIRONMENTAL BIOETHICS (2)
Hall H
Co-Chairs: Zohar Lederman, Vugar Mammadov
Hall D
End of life decisions in oncology – decisions against
life-prolonging treatment in young patients
Katsiaryna Laryionava, Germany
An institution one cannot disparage: the long-term
marital bond and euthanasia in Haneke's film Amour
Esther-Lee Marcus, Israel
Nurses´ difficulties to talk with patients in the end of
life about health care decisions
Juana María Granero-Moya, Spain
Human honor solution process for the euthanasia and
willpower concept and the disputes resulting from the
differences between national laws and international
laws in terms of health law and basic human rights
Ne e Çetin, Turkey
“Dignity” and end-of-life decisions in England and
France
Ruth Horn & Angeliki Kerasidou, UK
For a new ethics and politics of bioculture
Franco Manti, Italy
Rights of citizens for healthy environment during
natural urban growth (right to silence)
Mahammad Imran Oglu Baziqov, Azerbaijan
Environmental medicine in the 21st century
Zohar Lederman, USA
Why we need to strengthen control on GMO food
products turnover
Vugar Mammadov, Azerbaijan
INTERCULTURAL BIOETHICS & LIFELONG
LEARNING WORKSHOP (6)
DIGITAL SOCIETY & EMERGENT RIGHTS
Co-Chairs: Carlo Pasetti, Mirella Scala
Hall I
Culture of innovation, connecting people: figures and
opportunities
Sveva Avveduto, Italy
32
Thursday, November 21, 2013
Policies of the Basilicata Region for the overthrow of
the digital divide
Vito De Filippo, Italy
Innovation, knowledge and future
Cristiano Radaelli, Italy
Meeting the challenge of future educational scenarios
Marco Rossi Doria, Italy
9
Consent of minors: bioethics point of view
Elena Nave, Italy
Consent of minors: clinical point of view
Roberto Rosset, Italy
Conscientious objection
Franco Alberton, Italy
Digital society: new chances and new differences
Giacomo Sado, Italy
Autonomy of professional practice and constraints of
healthcare organizations
Antonio Panti, Italy
The dark side of the digital divide
Lisa Somma, Italy
CONSULTA POSTER SESSION
Hall B
Co-Chairs: Eduardo Consiglio, Nicoletta Gasparini
IPASVI ITALIAN PROFESSIONAL COLLEGES
Hall J
OF NURSES WORKSHOP (2)
ETHICAL DILEMMAS: NURSING EDUCATION AND
NURSING RESEARCH
Co-Chairs: Monica Gazzola, Helga Zen
Archives of surgical pathology as a tool for
comprehension of biological behaviour of malignancies
Gabriele Margiotta, Italy
The nurses attitudes towards the use of physical
restraint: a focus group study
Monica Gazzola, Italy
Ethical difficulties in nursing, educational needs and
attitudes about using ethics resources
Cinzia Leuter, Italy
Narrative and bioethics themes within the nursing
education
Marina Negri, Italy
In search of salience: phenomenological analysis of
moral distress
Dina Moranda, Italy
Crushing and covert medications in nursing home:
prevalence and implications for practice
Anna Castaldo, Italy
REPRODUCTION, ETHICS AND LAW (1)
Hall K
Co-Chairs: Edna Raquel Hogemann, Elena Ignovska
Transnationalization on the technique of assisted
human reproduction
Edna Raquel Hogemann, Brazil
The legal position of sperm donors assisting single
women to reproduce
Elena Ignovska, Belgium
Assisted Human Reproduction (AHR) and the legal
concept of filiation
Martha Miranda, Kenya
Having a child after death: reproductive rights,
children’s interests and the regulation of technologies
Yun-hsien Diana Lin, Taiwan
The determination of death with regard to organ
transplantation: 20 min vs 2 min
Arianna Giovannetti, Italy
Accidental thawing of embryos and oocytes: legal
aspects and medico-legal profiles
Michela Cicconi, Italy
Post mortem fecundation rules in EU members:
the usage of sperm after donor’s death
Paola Mancarella, Italy
Cultural and ethical issues on female genital mutilation:
the Italian situation
Laura Panata, Italy
The future role of the “invasive” autopsy in the
investigation of deaths and possible alternatives
Italian Group of Young Medico-legal Doctors
The European legal framework for “compassionate use
programmes”: similarities and differences between five
member states to guarantee a better quality of life in
patients affected of serious and/or chronic debilitating
or life-threatening diseases
Sara Hemied, Italy
Compassionate use: Italian case law
Irene Catarinozzi, Italy
The use of unapproved drugs for “compassionate use”:
Italian law and re-emerging regulatory requirements
Laura Iovenitti, Italy
NAPLES FEDERICO II UNIVERSITY ETHICS
COMMITTEE WORKSHOP (7)
MISCELLANEA
Co-Chairs: Bruno Della Pietra, Paolo Rubba
Hall C
The travel of “good death”
Rosa Ferrara, Italy
12:30-14:00
FNOMCeO /NATIONAL FEDERATION OF
Hall A
ORDERS OF PHYSICIANS & DENTISTS/WORKSHOP (2)
BALANCE BETWEEN DEONTOLOGY AND LEGISLATION
Co-Chairs: Bruno Zuccarelli, Gian Aristide Norelli
Informed consent and advance directives for treatment
Roberto Longhin, Italy
Long lasting endemic fluorosis in the Vesuvius area
population: a matter of ethics?
Pier Paolo Petrone, Italy
Palaeobiological research and ethical implications for
treatment, study and conservation of skeletal human
remains
Giuseppe Quaremba, Italy
Thursday, November 21, 2013
The decision-making process with regard to the videoassisted thoracic surgery in eighty years old hesitant
individuals
Ciriaco Cecere, Italy
DEATH AND DYING (3)
Co-Chairs: Ehud Shalmon, Yuichi Minemura
Hall D
Advanced treatment directives: a comparative study
between Italy and Brazil
Marilia Pedroso Xavier, Brazil
Playing God at an intensive care unit: the Brazilian
case of Dr Virginia de Souza
Luciana Pedroso Xavier, Brazil
On the violation of self-autonomy of patients in lifethreatening condition: can a dying patient make a
reasonable decision?
Ehud Shalmon, Israel
End-of-life care in Andalusia, Spain
Maribel Tamayo Velázquez, Spain
FORENSIC MEDICINE
Hall G
Co-Chairs: Olufumilayo Yetunde Elegba, Andrea Baloghová
Development of molecular pathology infrastructure
in Nigeria: The emerging opportunities, legal and
ethical implications
Olufumilayo Yetunde Elegba, Nigeria
Ethical and legal problems in forensic medicine in Slovakia
Andrea Baloghová, Slovakia
WAR, SECURITY AND ETHICS
Co-Chairs: Mohd Zin Bidin, Barry Roth
Hall H
Ethics & military medicine: an analysis of medical civilian
assistance programs & the problem of dual loyalty
Sheena M. Eagan Chamberlin, USA
How do you know when it’s torture?
Barry Roth, USA
Metaphysical analysis of issues regarding human
identity in contemporary brain death controversies
Yuichi Minemura, USA
REFUGEES, IMMIGRANTS AND ASYLUM
SEEKERS
Co-Chairs: Edward S. Dove, Deborah Zion
Hall I
Hall E
The Confucian tradition of medical ethics in medical
humanities
Weijia Wang, China
Establishment and development of bioethics science
in Azerbaijan
Jalal Aliyev, Azerbaijan
The DNA databases between the need of justice and
the protection of individual rights
Ester De Luca, Italy
Ethical problems of susceptibility testing
Maria Chiarelli, Italy
Bioethical implications of synthetic biology: a
precautionary approach to risks of new science
Arianna Serra, Italy
CONFIDENTIALITY AND PRIVACY
Co-Chairs: Adi Liberty, Michael Lupton
Ethical issues in the clinical diagnosis of Huntington
Disease
Elena Salvatore, Italy
Medical ethics in war: a moral dilemma?
Mohd Zin Bidin, Malaysia
Living with an oncological pathology
Roberta Martino, Italy
BIOETHICS GENERAL (11)
Co-Chairs: Weijia Wang, Jalal Aliyev
33
Hall F
Medical information in a changing world: providing
information via phone calls to relatives of hospitalized
patients
Adi Liberty, Israel
Access to healthcare for undocumented migrants in
Belgium
Saphia Mokrane, Belgium
The biopolitics, ethics and law of compulsory DNA
testing of refugees
Edward S. Dove, Canada
Discrimination of migrants in health care: A systematic
literature review
Daniel Drewniak, Switzerland
About secrets and lies: ethics, stigma and asylum seeker
research
Deborah Zion, Australia
NURSING
Co-Chairs: Nili Tabak, Sarah Nissim
Hall J
Do caregivers have the right to refuse treating
terrorists?
Nili Tabak, Israel
Nursing students experiences coping with ethical
dilemmas during first clinical placement
Sarah Nissim, Israel
The ethics of the Veri Chip human implant
Michael Lupton, Australia
What they say: the ethical and moral conduct of nursing
students during study and clinical practice - a case
study
Debbie Muchnik, Israel
Medical data protection: a fundamental right in the
hi-tech and information society
Fernanda Schaefer Rivabem, Brazil
Therapeutic obstinacy: the nursing role between
autonomy and responsibility
Christian Dall’Olmo, Italy
34
Thursday, November 21, 2013
REPRODUCTION, ETHICS AND LAW (2)
Hall K
Co-Chairs: Giovanna Ricci, Stephanie Bernstein
Current situation of medically assisted reproduction
in Italy and jurisprudence of the European Court of
Human Rights
Giovanna Ricci, Italy
The rights of the unborn child and artificial reproductive
technologies
Ignatius Chikwado Okuta, Italy
Oocyte freezing - producing freedom or reproducing
fears?
Stephanie Bernstein, Germany
Human dignity and assisted reproduction: bioethical
challenges within the Nigerian context
Michael Etim, Nigeria
Is ART a test for conservatism? A Polish case
Anna Alichniewicz & Monika Michalowska, Poland
14:00-14:30
CLOSING SESSION AND DISPERSAL
Poster Presentations
Tuesday, November 19, 2013
T01
Acquisition of consent to medical treatment under
mandatory health: simple binding legal or the main
instrument for the promotion of therapeutic
relationship
Cristiano Barbieri, Italy
T02
Stability over time in the preferences of older persons
for life-sustaining treatment
Inés Maria Barrio Cantalejo, Spain
T03
Assisted reproduction in Italy: bioethical, juridical and
medico-legal dilemmas
Rosagemma Ciliberti, Italy
T04
Prison treatment and ethical dimension
Paolo Danesino, Italy
T05
Moral and legal responsibilities - dilemmas faced
in pharmacy - experiences from the Republic of
Macedonia
Merita Dauti, Republic of Macedonia
T06
Ethical standards and normative regulations in
the field of medical care in emergency situations
Alena Donika, Russia
T07
Linguistic and cultural validation of an instrument for
the analysis of ethical values of nursing students with
special reference to honesty and altruism
Stefano Finotto, Italy
T08
The act ethics in health care: the path of ethics
Raffaela Genzale, Italy
T09
The Interuniversity Research Centre on Bioethics of
Naples - activities on the bioethics of the beginning
life
Pasquale Giustiniani, Italy
T10
Current status of institutional review boards and
approvals of clinical research in oriental medical
hospitals in Korea: a survey
Jung Hee-Jung, South Korea
T11
Attitude, practice of clinical physicians in Vietnam
on medical errors and conflict of interest
Tran Thi Thanh Huong, Vietnam
T12
Preventive mastectomy: overtreatment or personal
harm?
Francesco Introna, Italy
T13
The cloning and its ethical-legal implications
Fatbardha Ismaili, Republic of Macedonia
35
T14
Dealing with violence in a combined organizational
structure - an instructive response from a therapeutic,
ethical and safety perspective
Ronit Kigli, Israel
T15
Health care guarantee in secondary health care telemedicine to the rescue
Hanna Kuusisto, Finland
T16
Missing person DNA data-base to counteract the illegal
traffic of organs
Massimo Lancia, Italy
T17
The foundations of the Italian medical ethics following
the finding of the Professional Codes of the Medical
Chamber of Istria (1897) and of the Medical Chamber
of Trento (1900)
Sara Patuzzo, Italy
T18
Emotional communication in helping relationships for
the treatment of disorders related to new forms of
addiction
Rocco Quagliariello, Italy
T19
A pilot study of pharmacy students’ perceptions
regarding ethical values, conscientious and religious
objections
Vojin Rakic´, Serbia
T20
National growth’s characteristics of bioethics in Russia
Natalia Sedova, Russia
T21
Ethics, hemodialysis and patients with differing ages
Ronen Segev, Israel
T22
Professional dignity in nursing implicates patient safety
for Italian nurses
Alessandro Stievano, Italy
T23
The experience of ethics committees in the
Andalusian System of Public Health, Spain
Maribel Tamayo Velázquez, Spain
T24
Bioethics contribution to integral formation on higher
education
Valeria Trigueiro Santos Adinolfi, Brazil
36
Poster Presentations
Wednesday, November 20, 2013
9
W01
Ethical problems of integration of children with
disabilities in Bulgaria
Silviya Aleksandrova-Yankulovska, Bulgaria
W15
Post mortem fecundation rules in EU Members:
the usage of sperm after donor’s death
Paola Mancarella, Italy
W02
The Health Technology Assessment (HTA): the
distinction between “innovation” and “new business”
Rosalba Caldarazzo, Italy
W16
Archives of surgical pathology as a tool for
comprehension of biological behaviour of malignancies
Gabriele Margiotta, Italy
W03
Regional differences within the programmes of
screening for breast cancer: ethical problems of health
policy and management
Michelle Capasso, Italy
W17
Sensitization and incorporation of ethical practices in
pathology postgraduate curriculum in India
Mary Mathew, India
W04
Compassionate use: Italian case law
Irene Catarinozzi, Italy
W18
Impact of eastern socio cultural determinants on end
of life decision making
Princy Louis Palaty, India
W05
Accidental thawing of embryos and oocytes:
legal aspects and medico-legal profiles
Michela Cicconi, Italy
W19
Cultural and ethical issues on female genital mutilation:
the Italian situation
Laura Panata, Italy
W06
Ethics committees and GCP and GLP Rules
Susanna Davtyan, Republic of Armenia
W20
Bioethical aspects of pharmacotherapy of rare diseases
in Serbia: from the point of view of medical students
Milica Prostran, Serbia
W07
Socio-economic factors related to the withdrawal of
chloroquine (CQ) in the range of production plant
Malian pharmaceuticals
Samba Diop, Mali
W08
The future role of the “invasive” autopsy in the
investigation of deaths and possible alternatives
Italian Group of Young Medico-legal doctors
W09
The determination of death with regard to organ
transplantation: 20 min vs 2 min
Arianna Giovannetti, Italy
W10
Reasons for asylum seeking and medical certification
Luciano Gualdieri, Italy
W11
The European legal framework for “Compassionate
Use Programmes”: similarities and differences between
five member states to guarantee a better quality of
life in patients affected of seriously and/or chronic
debilitating or life-threatening diseases
Sara Hemied, Italy
W12
The use of unapproved drugs for “compassionate use”:
Italian law and re-emerging regulatory requirements
Laura Iovenitti, Italy
W13
Styles of bioethics education in Poland
Pawe uków, Poland
W14
Nurses coping with ethical dilemmas during work
Helen Malka-Zeevi, Israel
W21
The ethics of treating adolescents with anorexia
nervosa: the case for justified paternalism
Tomas J. Silber, USA
W22
The strategic plan on bioethics of the Regional Ministry
of Health and Welfare of Andalusia (Spain): an
innovative experience in public policy
Pablo Simón-Lorda, Spain
W23
Should or must there be a finding of materiality
regarding, and disclosure of, physician financial conflicts
of interest that both patients want to know about
and that, when disclosed, affect their decisions whether
to accept care recommendations?
Roy G. Spece, USA
W24
Attitudes, perception and knowledge of bioethics
among physicians and post graduate trainees of
hospitals of Islamabad and adjacent regions
Rizwan Taj, Pakistan
UNESCO Chair in Bioethics 9th World Conference
Bioethics, Medical
Ethics and Health Law
Abstracts
Oral Presentations
(alphabetical order by author)
Abstracts of Oral Presentations
RAPE – A TERMINAL CONDITION OF TRAUMA:
WHY PALLIATIVE CARE IS A BETTER APPROACH
THAN PSYCHIATRY
Ayesha Ahmad, University College London, UK
[email protected]
This article separates rape from other traumas in a series of stages; (1)
clinical, (2) phenomenological, and (3) societal. The overall argument,
represented by each of these stages, is that despite much work to
deconstruct the rape victim identity, the effects of rape are irreversible.
PTSD is a unique diagnostic criterion because it specifies that there must
be an event external to the person to cause the abnormal condition. This
article claims that rape needs to be diagnosed as a disease. The further
point that this article will make is that rape is a terminal condition of
trauma and therapeutic models from a psychiatric framework are
redundant. Rather, a palliative care approach better captures the type of
management necessary for the clinical treatment of those who have been
raped. Finally, suicide tendencies in rape-related PTSD patients need to be
understood as an operational force of rape-as-a-disease rather than a
symptom of distress. In particular, this paper will explore ethical
implications for this reclassification of trauma in global contexts where
both psychological support and palliative care are under-resourced.
A NETWORK TO ENHANCE LIFELONG LEARNING
Aurealiana Alberici, Italian University Network for the Lifelong Learning,
Italy
In geopolitical environment which has gone through a deep change,
lifelong learning can be considered as guiding principle for global
equitable development, implying inclusive cultural models and policies.
Yet it is actually this risk of neo-liberal drift which generated
unprecedented social issues. The framework in which the following
reflections are placed, is basically defined by the adoption of a
perspective which considers, in complex global societies, the
“development as a freedom”. The network RUIAP, in the light of the
objectives recently identified in the framework of the Europe 2020
strategy, aims to reinforcing the role of lifelong learning in the higher
education as strategic resource to develop more inclusive and responsive
universities, in order to face the present crisis and design a future based
on intelligent, sustainable, inclusive development.
CONSCIENTIOUS OBJECTION
Franco Alberton, FNOMCeO Deontological Committee, Italy
[email protected]
The term “conscientious objection” indicates a generic refusal to perform
actions which, even if imposed by law, are judged to be irreconcilable
with ethical, religious or ideological principals. Refusing treatment
assumes enormous relevance in the medical field, given the primary
interests of the individual and also the potential consequences for the
conscientious objectors of possible infringement of the law (omission).
There is, therefore, a difference between the objection contemplated and
allowed by the law as an exception to the obligation imposed and the
objection which, if implemented, constitutes an effective breach of the
law.
In Italy, conscientious objection as a right contemplated by law is
envisaged, in the health care context, in only three cases: in the
regulations on voluntary interruption of pregnancy, in medically assisted
procreation and in those regarding experimentation on animals.
Above all, in the first two cases the possible conflict with principles
deemed to be non-renounceable for a large number of citizens and,
therefore, also for many health operators, appears evident.
We can talk about “illegal” objection when the refusal involves actions
required by law without exceptions. In such cases, the person who raises
the conscientious objection and refuses the treatment may incur legal
consequences, while on a deontological level the problem may turn out to
be very complex. For the health operator, in fact, the possibility of
abstaining from activities which are in stark contrast with his/her
principles, is recognized. This right must, however, always find a just
equilibrium with the interests of the person who is requesting help.
39
INTERCULTURAL BIOETHICS: THE USE OF HUMAN RIGHTS
TOOLS FOR CONFLICT SOLUTION
Aline Albuquerque, Human Rights Secretariat at the Presidency of the
Republic, Brazil
[email protected]
The Universal Declaration on Bioethics and Human Rights adopted by
UNESCO in 2005 established that the importance of cultural diversity and
pluralism must be taken into consideration. However, such consideration
must not be used to violate human rights or to limit its scope.
Intercultural bioethics must deal with this tension. If, on the one hand,
the adoption of interculturalism as attitude facing different cultural
contexts implies the respect to differentiated cultures and urges that
these cultures are treated equally, on the other hand, incorporating
human rights as a technical-normative framework brings ethical-legal
barriers that cross through all cultures.
This article aims to point out the problem of using human rights as a
theoretical-normative mediator of the conflicts in bioethics that bear
elements of interculturalism. In other words, which tools are offered by
the human rights framework to solve such conflict?
The methodological steps adopted in this inquiry were:
i. analysis of the concept of intercultural conflict in bioethics, from the
perception developed by Colectivo Amani;
ii. study of human rights as common morals and tools of the culture of
human beings, based on Bauman’s and Beauchamp’s theories;
iii. investigation of the tools that human rights offer so as to solve
intercultural conflicts in bioethics. It was concluded that intercultural
bioethics must incorporate to its prescriptive and descriptive tasks norms
and institutions of human rights that ensure the participation and social
integration of the individuals from communities that are in cultural
conflict. Such measure will act as instruments for the solution of
intercultural conflicts.
OBSTACLES TO EFFECTIVE ETHICS EDUCATION OF
MEDICAL PROFESSIONALS IN BULGARIA
Silviya Aleksandrova-Yankulovska, Toni Vekov, Medical University-Pleven,
Bulgaria
[email protected]
Background: Medical ethics was introduced as a separate subject in
undergraduate medical education in Bulgaria in 1991. Each medical
university prepared its own study materials. Some university teachers got
ethical training abroad. In 2007 the ethics teaching programmes of all
Bulgarian medical universities were added to Global Ethics Observatory
database of UNESCO.
Although teaching of medical ethics has been introduced more than two
decades already, there are obstacles to its effective outcomes. The aim of
this report is to analyze these obstacles and to suggest approaches to
overcome them.
Discussion: The comparative analysis of ethics teaching programmes in
Bulgarian medical universities has shown similar topics and number of
teaching hours. The courses are scheduled in the first years of medical
studies when students still lack clinical experience. There is disproportion
in teaching hours between different medical specialties.
The acceptance of ethics in medical practice is controversial. There is
still wide misunderstanding over the subject of medical ethics. Ethics
education stands mainly as theoretical expertise and there is
insufficient motivation for application of dilemma training in clinical
settings. Additionally, there is lack of cooperation between the
universities. Every university uses different study materials and
educational approaches.
Conclusion: Several ideas could be applied towards increasing the
effectiveness of ethics education. The establishment of a National
association on bioethics could improve the cooperation between
educational institutions and experts in the field. Foundation of a
national bioethics journal would contribute for development of
bioethical studies. Post-graduate courses should be offered for
continuous bioethics training.
40
UNESCO Chair in Bioethics 9th World Conference
ASSESSMENT OF PARENTING COMPETENCE IN
INDIVIDUALS WITH MENTAL ILLNESS AND THE ROLE OF A
NEW KIND OF LEGAL GUARDIANSHIP IN ITALY
Linda Alfano, Rosagemma Ciliberti, Gabriele Rocca, Tullio Bandini,
University of Genova, Italy
[email protected]
The contributions of psychological and psychiatric sciences on assessment
of parenting competence show that the support of the family, the
specialists’ involvement and the precociousness of the intervention
supporting the parent-child relationship may balance some limitations
that impair a mentally ill parent. In particular it seems that the continuous
support of an individual who is able to provide learning opportunities as
well as practical advice and assistance in daily tasks and who is in the
wings and ready for directly take specific charges and who is able to
support the parent-son relationship.
In cases of child custody, the expert witness, aiming at assessing the
parental competencies, needs to recognize not only the mental disorder
and its impact on the specific parental functions, but also the real
resources and tools that can be activated to improve the parental
competency.
New perspectives on assessment of parental competency and, in
particular, on the identification and development of measures aimed at
protecting the mentally ill parent may be offered by recent and innovative
institution in Italian legal guardianship, the – so called – sustaining
guardianship, introduced by Law n. 6 in 2004.
This figure may represent a useful resource to protect the different
dimensions of the personality of the mentally ill parent and to remove the
obstacles that hinder the expression of attachment.
IS ART A TEST FOR CONSERVATISM? A POLISH CASE
Anna Alichniewicz, Monika Michalowska, Medical University of Lodz,
Poland
[email protected], [email protected]
In the recent years there has been observed a rapid development of
assisted reproductive technology (ART) practices in Poland accompanied
by a rising acceptance of this type of medical service in Polish society.
Despite the fact that the need for the legal framework has been
recognized and discussed in Poland for ten years, there are still no legal
regulations of any of the main ART procedures, that is in vitro fertilization,
egg donation and pre-implantation diagnosis. In 2012 and 2013 two sets
of medico-moral guidelines were issued by the Polish Bioethical
Committee and the Polish Chamber of Physicians and Dentists,
respectively. In our presentation we would like to have a closer look at
the cluster of assisted reproductive issues in Poland. We would like to
focus on three main problems. First, we argue that the tension between a
rising acceptance of these technologies in the Polish society and a
conservative attitude still prevalent among the Polish political elites is the
main factor responsible for the lack of legal regulation of all ART
procedures in Poland. Secondly, we analyze the discrepancy between a
rather conservative approach adopted in the regulation issued by the
Polish Chamber of Physicians and Dentists and a more liberal stance
represented by the Polish Bioethical Committee. Finally, we examine the
discrepancy between the commercialization of ART procedures and the
language of gift and solidarity overwhelmingly employed in the
‘reproductive market’.
THE ROLE OF INFORMED CONSENT IN ASSISTED
REPRODUCTIVE TECHNOLOGIES
Faiza K. Aliyeva, Zemphira H. Huseynova, Institute of Obstetrics &
Gynecology, Ministry of Health, Azerbaijan
[email protected]
Today as a result of scientific advances in medicine, the use of assisted
reproductive technologies has become possible to overcome various
forms of infertility and the emergence of new human life.
However, in practice there are many questions related to new
reproductive technologies. Certain ethical and legal problems associated
with obtaining patient information and medical diagnostics for medical
intervention, methods of providing assistance and the possible risks,
consequences and impact.
There complexity judgments about how expounded physician information
is objective up to date as far as professionally and accurately set out the
specific situation.
Patients are the most vulnerable subjects of law. For the simple reason
that they do not have the medical knowledge.
Sings informed consent should be directed at overcoming the imposition
of the will of the patient and the doctor’s views about method of
treatment and legal protection of the patient from experiment, from
specialist research intentions and possible criminal violations.
With auxiliary reproductive technologies it must be taken into account all
the principles of informed consent:
1. Complete, detailed information providing
2. Giving understandable, accessible information
3. Competence of the patient to assess it
4. Voluntary consent
Informed consent in the application of methods of overcome infertility
should be a requirement before every medical intervention.
THE PUBLIC PERCEPTION OF NEUROSCIENCE
Agnes Allansdottir, University of Siena, Italy
The idea of a science that has become "too complicated" to be
understood by the general public has been largely emphasized especially
following developments in the physics of the early twentieth century. The
key elements of this approach is the need for mediation between
scientists and the general public – made necessary by the complexity of
the scientific content: the identification of a class of professionals and
institutions responsible for such mediation (science journalists and, more
generally, the advisers, the museums and the citadels of science), on the
basis of a linear conception, educational and paternalistic communication,
they have therefore called to increase and to improving the quality of the
science public communication.
VIOLATING DIGNITY BY OFFERING ORGANS FOR SALE? A
CRITICAL EVALUATION OF DIGNITY IN THE CURRENT
DEBATE
Zümrüt Alpinar, Institute of Biomedical Ethics, University of Zurich,
Switzerland
[email protected]
Organ selling is prohibited since it is accepted as violating human dignity.
Although the dignity concept has received its due attention in the current
ethical debate, still it does not seem to have a clear meaning, by which a
consensus can easily be achieved. In the bioethical debates in general and
in organ selling debate in particular, it appears that dignity can either be
understood as having a function to foster autonomous choices or would
function as a constraint, which puts limits on individuals’ autonomous
choices. If it fosters autonomous choices, then one can argue for organ
selling by stating respect of autonomy. Since autonomous beings have a
right to decide whatever they would like to do with their own bodies, to
restrict their choices would fail to show respect for their dignity. On the
other hand, if it is a constraint, then there surely is a concern about what
autonomous beings are morally allowed to do with their bodies. So, is it
the autonomy of the persons that give them dignity or is dignity a value
different than autonomy of the persons? In this paper, after critically
evaluating the ethical debate evolving around these values, we will argue
that dignity should be understood as a social constraint, which would
clarify the dignity’s role in the current ethical debate and its possible
function in real world context.
ADVANCE DIRECTIVES IN ROMANIAN MEDICAL AND
JURIDICAL PRACTICE
Maria Aluas, Iuliu Hatieganu University of Medicine and Pharmacy,
Romania
[email protected]
Lately, the Romanian doctors, especially those from the intensive care
services, have shown interest in the advance directives institution.
Abstracts of Oral Presentations
Romania has no special law on advance directives, besides that the
cultural and religious context is far from encouraging serious and
comprehensive debates on the legalization and implementation of these
documents. Romania ratified the Convention on Human Rights and
Biomedicine, which establishes the possibility to express your will in
advance, related to medical intervention on patients who aren't able to
do it, at the time of the intervention (art. 9). Also the Medical Deontology
Code (2012) states that patient wishes, decided in advance, will be taken
into account if he/she is not able to express it (art. 16). What happens,
however, in the day-by-day medical practice to the patients who are not
able to express their will regarding medical interventions, or those which
are in vegetative state? Who are the ones who decide? How these
surrogate decisions are received by doctors? What solutions offer the
legal practice in Romania in the case of conflicts between the ones who
must protect the rights of patients unable to express their will? What are
the right ways for those dealing directly with these situations? This paper
is the result of a few focus groups organized on advance directives in the
Romanian context, by our department. Physicians, surgeons, lawyers,
sociologists, social workers, psychologists, priests and bioethicists have
participated to this activity. The conclusion is that the regulation of
advance directives is a necessity for doctors and a great challenge for the
legal practice. Also the presentation will show the Romanian
particularities on these issues.
IMMIGRANT WOMEN FROM SUB-SAHARAN AFRICA IN
ITALY – A SURVEY ON THE PHENOMENON OF INDUCED
EARLY ABORTION DURING THEIR IRREGULAR STAYING:
EPIDEMIOLOGICAL, ANTHROPOLOGICAL AND ETHICAL
ASPECTS
1
2
L. Andrissi , G. Mottini
1
Tor Vergata University, Italy
2
Campus Bio-Medico University, Italy
[email protected], [email protected]
Several studies have showed a high rate of Induced Early Abortion (IEA)
among irregular immigrants and refugees (up to 50% of pregnancies)
especially for those coming from Sub-Saharian Africa.
100 women (aged 27 in mean, 43 IEA), temporary living in the two largest
Reception Centres for Asylum Seekers (CARA) in Europe (Crotone and
Mineo, Italy), were asked to fill a questionnaire for epidemiologic aspects,
and semi-structured interviews were performed to identify the
anthropologic and ethic triggers that push to IEA and find solutions. The
main languages were English and French.
Statistical analysis shows that to come from urban settings, to be single,
Nigerian, with a low educational level and a poor knowledge on
reproductive cycle and family planning methods (natural, chemical,
chirurgic), was related to IEA (p<0,05). The most influential factors driving
to IEA were economic and cultural (fear of parents, ashamed to be
misjudged). Cultural, ritual and religious beliefs (foetus identity, when he
became a living human being inside the womb) can be both, push and pull
factors. The lack of their enlarged family, migration experience, fear of
the future have an important influence for the choice. Interviews report
interesting aspects of narrative based medicine and show how loneliness
and fear are the root causes that drive to IEA. To strengthen women
personality, create educational and moral certainties and supporting
networks, aimed at irregular immigrants, inside and outside the CARA, to
find mothers, grandmothers and aunts substitutes, it may be the right key
to help them.
PSYCHOLOGICAL VULNERABILITY IN THE RECEPTION
CENTRE FOR ASYLUM SEEKERS (CARA) OF CROTONE, ITALY
1
1
2
E. Angeletti , G. Mottini , A. Giuliani , L. Andrissi
1
University Campus Bio Medico, Italy
2
Istituto Superiore di Sanità, Italy
[email protected]
1
Introduction: The North Africa Emergency of 2011 caused the arrival in
Italy of more than 60,000 immigrants. During their detention period in the
CARA, a high incidence of major psychological disorders was registered.
Materials and Methods: 97 guests presenting psychiatric symptoms and
disorders according to the DSM IV (Diagnostic and Statistical Manual of
41
Mental Disorders). The differential disease incidence according to sex, age
and origin was the starting material of the research.
Results and Discussion: Data analysis shows statistically significant
differences (p <0.05) between Asian and Africans in terms of both global
incidence and pattern of psychiatric disorders,
Asians males have more personality disorders than Africans. Among
symptoms, intrusive thoughts and flashbacks, nightmares are dominant in
the Africans, sleep disorders, substance abuse, suicidal thoughts in Asians.
No marked differences in disease patterns in terms of their origin were
registered in women that generally displayed a different distribution of
symptoms with respect to males.
Conclusions: Asylum seekers may have lived in the past traumas of
different nature, so the identification of victims, the assessment of mental
problems and personal care plans during their detention is important.
Cases of Post-Traumatic Stress Disorders (PTSD) were not detected in
spite of the high prevalence of associated symptoms. It shows that there
is often an underestimate (Communication? Missing evaluation?) of the
actual psychological situation of guests, which can result in episodes of
self-harm and violence.
The need of a rapid (no possibility of long and accurate psychological
care) albeit efficient psychological help to immigrants tailored around
cultural specific features opens relevant (and still largely unexplored)
bioethical dimensions for the almost absolute novelty of the same idea of
‘psychiatric illness’ in the ‘developed world’ sense in the migrant
populations.
ETHICS AN ESSENTIAL DIMENSION OF PRENATAL
DIAGNOSIS
Domenico Arduini, Tor Vergata University, Italy
[email protected]; [email protected]
Since the 1970s, with the acquisition of new biomedical technologies it
has been possible to engage in a prenatal diagnosis of many conditions of
the foetus involving illnesses and malformations and to permit better
knowledge of many clinical situations.
The use of these prenatal technologies, together with the development of
models of assistance and guidelines, has certainly modified the scenarios
of obstetric care, promoting a greater and more aware use of integrated
diagnostic systems and a more aware request for information by couples
on the condition of the foetus. However, at times the lack of correct and
agreed upon scientific information and the absence of in-depth critical
reflection, from a bioethical point of view as well, has led to an automatic
request for, and use of, the new technological supply both by agents and
users themselves.
We should also recognise that an excessive medicalisation of pregnancy
and prenatal screening and the fear of medical-legal disputes have
nourished a defensive form of medicine. We have thus ended up by
fostering a hedonistic vision of existence which witnesses future parents
pursue, too often, objectives that are dominated by a prevalently
materialistic approach, with the loss of ethical values, of a religious sense
and of the sacredness of life. In reality, this is a field where great scientific
competence, a critical spirit and great balance at the level of decisionmaking are required.
We should thus uphold: 1. the importance of avoiding every negative
tendency based on eugenics, the claim to total control over procreation,
through a complete medicalisation of pregnancy, where the principle of
the ‘envisaged quality of life’ prevails. On the contrary, we should stress
the ethical context of love and union between a man and a woman in
marriage as the only suitable context for welcoming life which
should always be seen as a gift. Medicine is at the service of this and not
of subjective desires or Prometheus-style projects of ‘enhancement’. 2.
Absolute respect for every human life from conception onwards, which
involves the exclusion of the principle of any direct abortion and any
disproportionate risk for the life and the health of the foetus. One is not
dealing here with a value that belongs to the objective sphere of women,
which should be respected, but of a principle that must guide the action
of every Catholic medical doctor or medical doctor of good will led by
upright reason. 3. Every use of invasive prenatal diagnosis must therefore
be governed by the basis of the principle of reasonable proportion
between risks (costs) and the benefits hoped for, with absolute respect
for the human life of the human being who has already been conceived.
42
UNESCO Chair in Bioethics 9th World Conference
CONSCIENTIOUS OBJECTION IN EMERGENCY
CONTRACEPTION: IS IT (A) RIGHT?
CULTURE OF INNOVATION, CONNECTING PEOPLE:
FIGURES AND OPPORTUNITIES
Mariarosaria Aromatario, Edoardo Bottoni, Simone Cappelletti,
Paola Antonella Fiore, Costantino Ciallella, ‘‘Sapienza’’ University of Rome,
Italy
[email protected]
Sveva Avveduto, Director, Institute for Research on Population and Social
Policies of the Italian National Research Council, Italy
Emergency contraception is an important option for women who have
recently had unprotected intercourse or a contraceptive accident and
who do not want to become pregnant. When a woman needs emergency
contraception, time is critical. It is mandatory to distinguish between
emergency contraception pill (ECP), also known as "morning-after pill",
and “the abortion pill.” Like other forms of birth control, ECP prevents
pregnancy from happening in the first place; specifically it postpones
ovulation, so that sperm does not come into contact with an egg.
Among the methods used in the context of emergency contraception the
most common is a formulation based on Levonorgestrel (LNG), a readily
available and easily administered low cost drug, characterized by minimal
side effects.
The paper analyzes the available scientific knowledge on LNG mechanism
of action.
The authors’ aim is to stress out the proved absence of abortive action of
the drug in order to point out the lack of scientific reasons in the
conscientious objectors’ claims about this issue.
Given the great importance of protecting the physicians’ right to act
consistently with its personal, ethical, moral and religious beliefs, the role
of validated scientific truth in defining the limits of such right, cannot be
underrated.
THE NEW LAW ON RELIGIOUS CIRCUMCISION IN
GERMANY AND ITS LEGAL, ETHICAL AND POLITICAL
DEBATE
Diana Aurenque, Institute for Ethics and History of Medicine,
University of Tubingen, Germany
[email protected]
The talk aims to illuminate the controversial decision of the German court
(2012) that ruled that religious circumcision of young boys constitutes
bodily harm. The focus of the presentation is to outline to what extent
invasive and irreversible physical interventions in boys who are unable to
consent should be carried out for non-medical reasons. With that in mind,
the new German law allowing religious circumcision of young boys should
be evaluated. In an attempt to tackle this issue, I will first elucidate the
basic problem of religious circumcision in Germany from a legal and
ethical perspective. Next, I will examine whether the legitimacy of
interventions in children should always be based solely on a medical
indication. In a further step, I will turn to the question of whether the
ritual circumcision violates the requirement of primum nil nocere. For this
purpose, benefits and potential harms of the circumcision of young boys
for non-medical reasons must be weighed. I will show that circumcision
does not provide any benefits and only poses risks to children. Then, I will
deal with the transformation of the circumcision debate in Germany from
a legal and ethical problem into a political issue. For this purpose, I will set
out to clarify the justification of the new circumcision law and
subsequently analyze this. Finally, I will draw the main conclusions from
the analysis.
THE MEDICAL DOCTOR AND THE CLANDESTINE PEOPLE:
THE ITALIAN VISION
Francesco Maria Avato, Sara Chierici, Rosa Maria Gaudio, University of
Ferrara, Italy
[email protected]
Italy is a land border with the States in which oppression and torture are
still perpetrate. The landings of illegal immigrants is coming in succession
since decades, without interruption. The immigration policy is based on
the activities of law enforcement agencies, national voluntary and health
care personnel.
The medical doctor, in particular, founded his own profession and find
justification for his actions in the Code of Ethics (Article 6) and the
legislation in force (Article 35 of Legislative Decree no. 286/98).
The presentation will address the question of the evolution of
connections among people up to the digital era, from different milieu
including epistemic communities. The culture of innovation accelerates
these processes and provides the appropriate nurturing base. Being
digitally educated equals nowadays to being literate and able to read and
write. But the digital divide is still very wide particularly for disadvantages
people and places.
IS IT ETHICALLY JUSTIFIABLE TO INVOLVE CHILDREN IN
NON-THERAPEUTIC RESEARCH?
Domnita O. Badarau1, Tenzin Wangmo1, Katharina M. Ruhe1, Anca Colita2,
1
Bernice Elger
1
University of Basel, Switzerland
2
Clinical Institute Fundeni, Romania
[email protected], [email protected]
Background: Conducting non-therapeutic research with children is a
much debated topic. While acknowledging that research with children
requires special protections, it is also imperative for promoting pediatric
health interests. The need for more pediatric research is less contested
for studies entailing possible participant benefit than for non-therapeutic
research. However, research ethics literature is split when it comes to
non-therapeutic studies involving greater than minimal risk for healthy or
severely ill children.
Aims: We will differentiate between different non-therapeutic research,
involving healthy and severely ill child participants, and construct an
ethical analysis that supports the conduct of such research. This will be
achieved by deferring to requirements of undue risk, exploring views on
minimal risks and minor increase over minor risk, as well as burdens.
Discussion: Current interpretations of regulations and diverging ethicists’
views make it difficult to define and measure risks in non-therapeutic
research. This leaves Ethics Committees reluctant to approve studies
including activities with an increase over minimal risk. Such incertitude
combined with fears of overburdening ill minor patients with studies
bearing no potentiality for direct benefit pose serious barriers to research.
We argue that strong ethical arguments either utilitarian or deontological
in nature should not be forgotten when assessing ethical permissibility of
non-therapeutic research. Without new findings gained from research on
all aspects of children’s health, the wellbeing and care of pediatric
patients will suffer. Children as a group may be vested in promoting
research and fostering altruism in children may be acceptable if negative
outcomes are reduced.
THE PROFESSIONAL DISCOURSE ON DESIRE FOR CHILDREN
AND PARENTHOOD IN MENTAL HEALTH SERVICE USERS IN
GERMANY – REFLECTIONS OF THE PAST ON ACTUAL
ETHICAL CHALLENGES
1
1,2
Gisela Badura-Lotter , Silvia Krumm
1
Ulm University, Germany
2
Bezirkskrankenhaus Guenzburg, Germany
[email protected]
Introduction: When dealing with reproductive issues among mental
health service users, mental health professionals find themselves
confronted with complex ethical problems including teratogenic, medical
and psycho-social risks for mother and (unborn) child. Despite its high
practical relevance there is only scarce knowledge on the perspectives
and strategies of mental health professionals on reproductive/parenting
issues among their patients.
Methods: The study adopted a three-fold qualitative approach: In the first
phase, document analysis was performed on textbooks of different
disciplines (psychiatry, clinical psychology, psychiatric nursery and social
work in psychiatry) as well as practice guidelines of the corresponding
societies. In the second phase, group discussions with members of all
professional groups active on mental health teams were conducted. In
Abstracts of Oral Presentations
the third (current) phase, problem-centered interviews with members of
mental health teams have been conducted.
Results: Reproductive topics are rarely addressed in textbooks and
practice guidelines and related ethical challenges for present psychiatry
are only addressed in textbooks on social psychiatry. However, we found
that the memory of the history of German psychiatry during the ‘Nazi era’
is very present in the contemporary German psychiatric discourse. In the
group discussions, reproductive autonomy and the well-being of children
were found to be dominating principles. Professionals developed specific
strategies to avoid the ethical dilemma including subordination of child
welfare, de-professionalisation, giving rational advice, and resignation.
We provide a comprehensive matrix of the encountered ethical principles
and propose to intensify open discussions within and among the
psychiatric disciplines in order to resolve professionals’ uncertainties and
to approach taboos.
43
ETHICAL AND LEGAL PROBLEMS IN FORENSIC MEDICINE
IN SLOVAKIA
A. Baloghová, S. Farkašová Iannaccone, N. Bobrov, A. Ginelliová,
P. J. Šafárik University, Slovakia
[email protected]
OVERVIEW LEARNING IMPLEMENTATION OF BIOETHICS
OF MIDWIFERY EDUCATION IN INDONESIA
Forensic medicine comprises two of the world’s oldest and noblest
professions, law and medicine. There are specific differences in ethical
and legal problems comparing to other medical branches, such as: legal
status of the dead body, ethical standards in breach of the integrity of the
dead body, its working environment, additional to close cooperation with
civil service authorities. The moral duty of the forensic doctor is to
consistently fulfill the main tasks of forensic medicine, naming: analysis of
the causes of death, detection of non lege artis procedures and the
suspicions of criminal acts, prevention of negative social phenomena and
providing materials in order to clarify and prevent criminality. Forensic
medicine contributes to keeping the legality and stability of the law
system of the state.
Mohammad Baharuddin, Irma Sapriani, Agus Rahmanto, Ernawati,
Erina Windiany, Budi Kemuliaan Health Institution, Indonesia
[email protected]
THE PROTECTION NETWORK ABOUT ASYLUM SEEKERS:
THE SOCIAL POINT OF VIEW IN ITALY
Indonesia is one of the countries with the highest maternal mortality
rates; Professional skilled birth attendance such as a Midwife can greatly
reduce maternal and neonatal mortality. Midwives’ capacity to provide
quality services depends on the health system and its supporting
mechanisms for midwifery practice. In order to improve the quality
service of midwifery education to the Community, heavily influenced by
two main things. The two things are 1) evidence based services, 2)
implementing bioethics. Implementation of bioethics is strongly
influenced by the time of prior learning in the Classroom, Laboratory and
Clinical Practice. Initial studies of the Midwife Education in Indonesia
shows that bioethics is still not optimal learning in the classroom,
laboratory and clinical practice.
This study aimed to: 1) Know the description of the process and conduct
instructional time in the classroom, laboratory classes and clinical
practice, 2) Knowing that taught bioethics picture material, 3) Knowing
the implementation of bioethics in the clinical picture, 4) Knowing the
picture presented in the learning module bioethics.
This type of research is a quantitative study using a cross sectional study
design. Population and its sample was Master and Student Academy of
Midwifery in Indonesia. Midwifery School of the number 750 would be
taken sample of 261 School of Midwifery (α = 0.05, CI 95%).
Antonio Banchini1, Francesco Camisotti2, Federico Tsucalas2,
Rosa Maria Gaudio3
1
University Parma, Italy
2
Cooperativa Sociale Camelot, Italy
3
University Ferrara, Italy
[email protected]
THE NEED FOR A CULTURALLY RELEVANT BIOETHICS FOR
ASIAN PEOPLE
INTERNET, BIOETHICS AND TRENDS OF CONDUCT
D. Balakrishnan, SRM University Chennai, India; Chair, Lead Bioethics Unit
India, International Bioethics NETWORK UNESCO Chair
There are cultural differences between East and West. An attempt at
outright adaptation of Western bioethics thoughts will encounter
difficulties if not rejection in Asia. Transplanting or transferring bioethics
ides from one culture to another is similar to organ transplant where
rejection can be expected. Human cultures generally respond to new
ideas from different value systems in much the same way. Recently
biomedical ethics has received much attention in Asia. These have been
motivated by advances in medicine leading medical scientists to look at
the ethical issues arising from this program and from the impact of
globalisation and its relation to health care.
This paper will discuss these issues and suggest that Asian bioethicists
should develop a bioethics program that responds to their own cultural
contexts. At times western principals such as autonomy adopted will need
to re-interpreted and even modified if necessary in light to represent the
Asian culture and beliefs.
SPRAR (Protection Network for Asylum Seekers and Refugees (SPRAR) is
composed by hosting projects, led by local public authorities with the
priceless support of actors in the third sector like Cooperativa Sociale (for
example Camelot – Officine Cooperative – is an NGO member of SPRAR in
the province of Ferrara, since 2006). The aim of the activities is to ensure
“integrated reception” for asylum seekers and refugees that goes far
beyond the mere supply of accommodation and meals, and includes
complementary activities like information services, intercultural
mediation, legal assistance, psychological support, vocational training and
tutoring to reach socio-economic inclusion.
This local network and cooperative, especially through projects funded by
“European Refugee Fund”, gained specific expertise on reception and
assistance of asylum seekers and refugees belonging to vulnerable
groups, as persons with mental diseases and victims of torture.
Stephanie Barajas, Luz Maria Pichardo Garcia, Panamerican University,
México
[email protected]
In 1985 Steve Jobs predicted that computers would be essential in the
future, people will buy computers to have them at home and to join a
communications network that would reach across the country. This
prediction has been overcome around the world, connecting people from
diverse cultures instantly. Part of this site communications are social
networks, which are characterized by uniting people with common
interests. A major impact social media is having on culture, particularly in
the thinking and acting of young people. Movies such as Matrix and The
Network give an idea of what is shaping ways of being and thinking. A
clear example of the negative influence is the movie Untraceable, where
violence conducted by Internet users is unlimited. When people connect
to the Internet through these networks, they think they cannot be
identified in the same manner as in society, disinhibiting their way to be
online, enabling new behaviors that otherwise had remained repressed. It
is interesting to note that people who uses social networks to meet new
people for different reasons: getting partner, make friends, participate in
social or professional activities, political interests, and to some extent,
crime. Through the network communicate options in many fields, such as
abortion, sexuality, gender. It's amazing how easily you can access sites
where shows pictures, videos and opinions on preferences that may be
used for good or for worst.
44
UNESCO Chair in Bioethics 9th World Conference
THE EFFECT OF ATTITUDES AND BELIEFS OF JEWISH AND
MUSLIM MOTHERS ON THE INTENTION TO INTEGRATE
DOWN SYNDROME CHILDREN IN SOCIETY
1
2
Sivia Barnoy , Anna Biton
1
Tel-Aviv University, Israel
2
Hillel Yaffe Hospital, Israel
[email protected]
Purpose: In recent years, there is an awareness of the positive impact of
the integration of Down Syndrome Children (DSC)in society on their
development. However, people are not always willing to do so. The
present study investigated Jewish and Muslim mothers' attitudes and
beliefs towards integrating DSC children in society.
Design: The design was cross sectional. Data were collected during
August-September 2012 from 48 Jewish and 53 Muslim mothers of
normal children.
Methods: The study was based on the Theory of Planned Behavior (Ajzen,
1991). Data were collected using a questionnaire consisting of four parts:
demographic information, attitudes, beliefs, and behavioral intentions
toward integration of DSC from three aspects: among the close family,
with normal children, and in the school system. Data were analyzed using
SPSS 18, with a t-test for independent samples and Pearson correlation
coefficients.
Results: The results showed positive correlations between the intention
to integrate DSC in society and attitudes and beliefs regarding integration
of DSC in society in all three aspects. Jewish mothers held more positive
attitudes and beliefs towards the integration of DSC in society and had
more intention doing so, compared to Muslim mothers.
Conclusions: Attitudes and beliefs influence the intention to integrate
DSC in society. Intention was influenced by religion, probably reflecting
different social norms.
GYPSY WOMEN PERSPECTIVES ON END OF LIFE DECISIONS
AND ADVANCE DIRECTIVES
Inés Mª Barrio Cantalejo1, Miguel Melguizo Jiménez1,
Francisco Javier Castro1, Patricia Peinado Gorlat2
1
Primary Health Center of Almanjayar, Spain
2
Research Project – Bioethics of the End of Life
[email protected]
Background: The Spanish gypsy community has its own cultural and moral
values. These values influence the way of facing the end of life,
dependency and health decision making.
Objective: To explore the prospect of gypsy women at the end of life and
healthcare decision making.
Design: Qualitative study. 33 Gypsy women belonging to training and
social development groups of two municipalities. Were collected five
groups between February and December 2012.
Participants: It was felt that the age and the role of caregiver are the
variables that can enrich a speech about the end of life and decisionmaking in this context. Both of them were used as segmentation criteria,
looking for heterogeneity between groups and homogeneity and
heterogeneity inside the group: age and caregiver of dependents.
Saturation is considered when the ideas expressed were recurrent.
Results: Main ideas are extracted from the data: 1) Important role of the
family in care at the end of life, especially of women, and in the
healthcare decision making. 2) The opinion of the community exerts great
influence about personal or family decisions. 3) Different preferences for
one self and others in the care they wish to receive at the end of life. 4)
Ignorance and denial of living will. They want to take into account their
health preferences, but "without papers".
Conclusions: The success of care at the end of life on gypsy women and
their incorporation into medical decision making is necessary to consider
and respect the cultural heritage of this ethnic group.
PSYCHOLOGICAL SUPPORT TO THE FAMILY IN THE
“LIFE-END”
Valentina Battimiello, Arianna Iorio, Alessandro Leonti,
Domenico Del Forno, International Office for Bioethics Research of the
European Center for Bioethics and Quality of Life of the UNESCO Chair in
Bioethics Unit – Ethics Committee “Carlo Romano”, University of Naples
Federico II, Italy
Dying represents the last stage of a human being life.
Dying is a difficult path to walk and provide support at such a time means
to help living.
Hence, the psychological support to “die well” becomes not only an action
fulfilling medical doctors’ duties, but also on ethical behavior.
The emotional stability of terminal patients strongly depends also on the
environment, and the role of the family is very important.
However, the family too is making the experience of the dying process
going through similar stages as the dying person. This process implies the
sequence of denial, rage, bargaining, depression, acceptance (Kübler-Ross
E., La morte e il morire, Trad.It. Di Zoppola C., Collana “Psicoguide”, ed.
Cittadella, 2008) and, at the same time, dynamics of affection changes
and reshaping of inter-subjective relationships.
The structure of the family is negatively affected because of conflicts of
role, communication difficulties, social isolation, disorganized or
exasperated involvement.
The examination, analysis and knowledge of these dynamics is
fundamental for organizing supporting therapies for the terminal patient’s
relatives in order to create the most suitable conditions for “die well”.
Such therapies must be part of supportive – expressive models which
must be also of the information-educational type so as to facilitate the
understanding and the course of the disease that will lead to the fatal
outcome. It should not be underrated that, in these framework, the
medical staff will have to face highly emotional relationships and data
defensive system might be adopted consisting of exclusion of empathic
and psychologically supportive behavior, while the latter is essential in
order to involve the family in the daily assistance to the dying and, at the
same time, easing the traumatic experience by trying to reduce the felling
of anguish and impotence.
MAINSTREAMING AFRICAN ETHICS INTO THE BIOETHICS
CURRICULUM
Kevin Gary Behrens, Steve Biko Centre for Bioethics, University of the
Witwatersrand, South Africa
[email protected]
For the most part, bioethics is not taught very differently in Africa than in
other parts of the world. African students are schooled in the traditional
Western moral theories of deontology, utilitarianism, virtue ethics, the
ethics of care, and the like. The approaches of principlism and casuistry
are as central to the teaching of bioethics in African universities as in any
schools in the northern hemisphere. The value of these approaches to
students seeking to navigate the complex terrain of ethics in health care
and medical science should not be underestimated. Yet, Africa has its own
ethical notions and value theoretical constructs with the potential to
enrich our moral thinking.
In this paper, I reflect on a process undertaken in the Faculty of Health
Sciences of a South African university, in which a deliberate attempt has
been made to mainstream African ethics into the bioethics curriculum.
Firstly, I provide a rationale for why it is important that African moral
traditions be included in the curriculum. I argue that students are more
likely to embrace indigenous moral notions, that recognition of such
notions can contribute to the restoration of the dignity of African people,
and that our moral discourse can be enriched in the process. Secondly, I
describe some of the strategies employed to achieve the goal of including
African ethics in the mainstream of bioethics teaching. Finally, I propose a
revised version of the influential approach known as principlism: a version
that incorporates salient African moral notions for the benefit of
bioethics, generally.
Abstracts of Oral Presentations
ETHICAL PARADIGMS FOR THE EVALUATION OF
NEUROTECHNOLOGIES IN HUMAN ENHANCEMENT
Paolo Benanti, Italy
[email protected], fr. [email protected]
Knowledge's improvement in neurosciences and large number of
neurotechnological application, big part of them over human beings,
should be well understood and evaluate to void serial ethical implications.
These experiments, often characterized by low invasiveness, are aimed to
better understand brain functioning and its relationship with the thought
and behavior. These trials have given a significant contribution to the
debate in the cognitive field, stimulated a philosophical debate about free
will-responsibility and attracted interest from the public. In this context
we show how ethics and bioethics should try to analyze how
neurosciences and neurotechnologies, with their progress, require to be
understood and analyzed mainly in relation to their impact on society to
answer with an effective governance. In our lecture we would like to draft
an outlook of this new frontier and let emerge how and why governance
of neurotechnology and enhancement drugs is urgently required. We will
summarize ongoing ethical paradigm that are now used to evaluate those
phenomena (“Fear for uncertain”, “Equality and pursuit for happiness”,
and “Policy) and we will propose a new paradigm based on recent
acquisition of philosophy of technology that we call “empiric turn”.
NEW FRONTIERS IN MEDICAL DEONTOLOGY
Maurizio Benato, FNOMCeO, Vice President; OMCeO Padua, President,
Italy
[email protected]
Technology today has spread to all professional and cultural activities
imposing codes of ethics which were, until today, unfamiliar to society.
Technology appears to have surpassed scientific knowledge to the extent
that some authors imagine situations of “scientific delirium” and
“technical totalitarianism” in which nature is viewed as a wicked
stepmother to be subjected and dominated while scientific knowledge
has become pure technical skill which often makes it independent of the
needs of man. Moral values appear today to be relegated to the margin of
science and research.
For medicine which is facing new technological realities – post-genomics,
stem cells, xenotransplantation, neurosciences – it is necessary to
formulate a new framework of ethical values.
Medicine, traditionally understood as that intellectual discipline
characterized by clinical observation, will therefore have to modify its
paradigms in the light of the new frontiers which have opened up in the
biomedical field.
PUBLIC-PRIVATE PARTNERSHIPS IN THE WATER SECTOR:
ETHICAL CONSIDERATIONS RAISED BY THE
MARKETIZATION OF WATER
Cécile Bensimon, University of Toronto, Canada
[email protected]
Public-private partnerships have become increasingly popular as an
alternative model for the strategic promotion of, and solution to, complex
public health problems, such as in the water sector. These partnerships
are considered an innovative institutional mechanism that combines and
capitalizes on the strengths and capabilities of the public and private
sectors to accomplish purported common or overlapping objectives. Even
if such synergies exist, there is a much more fundamental process of
redefinition at stake when private interests become involved in public
health initiatives. Local governments are willingly, or perhaps
unknowingly, applying the logic of the market to the supply and
management of water; and, in doing so, literally redefining water-service
provision: water is no longer a public good provided by the state, but a
commodity subject to market pricing and market allocation mechanisms.
This process of water marketization - grounded in the libertarian
principles of market justice and economic equity, themselves embedded
in Kantian notions of justice and autonomy – raises deep ethical issues. In
this paper, I question whether public-private partnerships are an
appropriate or feasible means of water provision by examining the
assumptions and transformative strategies underlying the process of
45
water marketization. I argue that when water is reconceptualized as a
commodity, principles of redistributive justice and social equity no longer
serve as the appropriate set of social objectives that weave shared
interests through a common good; but rather, it further entrenches a
Kantian (individualist) imperative that, at best, falls short of providing a
foundation for public health and, at worst, belies public health goals and
objectives, especially as it relates to water provision.
CINEMA AND TELEVISION: DEVELOPING SUBJECTIVE
DIMENSIONS TO DEAL WITH BIOETHICS
Moty Benyakar, Universidad del Salvador (USAL), Argentina
[email protected]
Transmission of bioethics principles on bioethics has undergone several
transformations, from the written deontological codes to dealing with the
specificity of each situation, with active participation of students. The
uses of role- playing, dramatization, discussion through the affective
dimension, have been some of those developments. All of them focus on
the deployment of subjectivity is essential, not only for conceptual
development, but also in the clinical application.
In our latest research about the role of television series and films, we
focus on the interplay between live scenes presented on films and clinical
situations which professionals face, noting that the subjectivity was
enhanced and magnified by what was presented on the screen.
Both film and television series have two central roles in the development
of subjectivity: one as a pedagogical tool, in which the viewer in the
classroom is confronted with live situations and, from them, discussions,
debates, and new developments. On the other hand, we understand that
these problems that are lived and thought in the classroom, are also
included in the daily lives of professionals of different areas, as well as the
people in general, that face these situations.
In the world, 2.000 million people watch TV series per day. This shows
that bioethics takes part not only in the academic and professional field,
but also into the everyday population thoughts. Different uses of film and
television will be presented, for further development of subjectivity to
face the challenges that bioethics faces permanently.
SPECIFIC ETHICAL CODES FOR MENTAL HEALTH CARE
PROFESSIONALS – DO WE NEED TO ANNOTATE?
Tal Bergman-Levy, Beer-Yaacov Mental Health Center; Secretary-General,
Israel Psychiatric Association, Israel
[email protected]
Mental health care and psychiatric practice constantly raise questions and
dilemmas in the clinical as well as in the ethical field. Ethical questions
regarding the balance between patients autonomy and the physicians
paternalism are being discussed on a daily base within clinical framework
of psychiatry Ethical codes were drafted by medical practitioners
associations to offer ethical guidance for physicians.
Do mental health caretakers require a separate set of "ethical tools", or
can existing "general" tools for doctors be utilized? In several countries
including Israel, a specific legislation was created by decision makers for
psychiatric treatment. A specific law sets the boundaries of psychiatric
care and limits compulsory care by defining the civil as well as criminal
procedures required for its implementation. Hence, do we also require a
specific /adapted ethical code for the profession?
Several psychiatric professional associations in several countries as
Canada, USA and Russia have created their own annotations of general
ethical codes for physicians. Cultural as well as historical reasons played a
significant part in the process. We will present and explore as a test case,
the specific situation of Israel where we have general ethical rules for
physicians, but not an adapted code for psychiatry – we will present the
ongoing debate regarding this issue and we will further present an
empirical study aiming to examine the attitudes of Israeli Psychiatrists
towards professional ethics, and ethical codes.
46
UNESCO Chair in Bioethics 9th World Conference
OOCYTE FREEZING – PRODUCING FREEDOM OR
REPRODUCING FEARS?
S. Bernstein, C. Wiesemann, University Medical Center Goettingen,
Germany
[email protected]
Introduction: Due to clinical improvement in vitrification the possibility
for healthy women to freeze unfertilised egg cells, so-called “social
freezing”, is likely to implement into clinical routine. This technique allows
women to postpone motherhood even after menopause.
While medical data exist, ethical analysis is scarce and information about
ethical evaluation of specialists in reproductive medicine (SRM) is lacking.
Material & methods: We systematically retrieved 23 articles with relevant
ethical content on this subject and, in 2011, conducted a quantitative
empirical survey with members of the biggest society for reproductive
medicine centers in Germany. In a questionnaire, we asked SRM for their
moral evaluation of “social freezing” in the clinical setting (response rate:
51.5%).
Results: We identified four major topics of the ethical debate:
reproductive autonomy, equality, postmenopausal motherhood and wellbeing of the child. SRM emphasize female autonomy (89.6%) and gender
equality (78.4%). A majority is concerned with the physical risk of late
pregnancies (56.6%).
Conclusions: While ethicists evaluate female autonomy and gender
equality in “social freezing” critically, SRM emphasize their importance.
SRM consider of relevance the medical risks of the procedure in late
pregnancies. Integrating these quantitative empirical findings in the
bioethical debate will result in a deeper understanding of the relevant
issues.
TATTOOS AND PIERCINGS: BIOETHICAL AND
EDUCATIONAL PROFILES BETWEEN NATURE AND BEAUTY
Carmela Bianco, Pontifical Faculty of Theology – St. Thomas, Italy
[email protected]
Tattoos and piercings can become a mask to hide behind?
Everything can become a mask if we use it for masquerading.
The tattoo is the anthropological roots of ancient and modern makeup
that refers to the mask understood as that which creates the face, which
gives it its social being. The tattoo is also an artistic decoration that should
be born by the deep desire to communicate yourself to others. Tattoos
must be able to "tell" the people who wear them, but if the latter
decorate their body with a message or image that does not belong, it can
cause the destruction of individuality. The tattoo is immortal. It can be a
permanent dress, a way to resist the unwanted transformations using a
piece of subjective identity, non-imitable, from which one cannot be
excluded.
Along with careful identification of psycho-sociological motivations that
drive a young man to want a tattoo, you need to traverse an education
that not only form a personality, teaches the knowledge of his own body.
Getting a tattoo means not only change the morphology of the body but
the risk of jeopardizing their health. Responsibility for their own health
also means being aware that a tattoo can procure mild side effects or
more severe depending on the initial state of health of the subject. Then a
tattoo only after a careful history following the favorable opinion of the
doctor and after a personal assessment aware. These initial objectives of
a path bioethical-pedagogical significant.
DEVELOPMENT OF A BIOETHICS PROPOSAL TO
IMPLEMENT A REURBANIZATION PROJECT IN THE
CENTRAL AREA OF THE CITY OF SÃO PAULO
José Pereira Wilken Bicudo, Ibero American Eco-Bioethics Network,
Brazil Unit
[email protected]
Introduction: The Project, located in the Center of São Paulo, can be
understood as a proposal for urban planning to provide, organize and
coordinate interventions in the area, within a specified schedule. The
public and private decisions have an urban project, not only the
definitions of the laws for use and occupation of land and master plans.
Project Prepared: The Project has no specific regulatory value as a Master
Plan or Land Use and Occupation Law; it is a document of goals and, in
particular, proposals for multiple and diverse interventions. The Project is
not considered as something static: it can be modified and no doubt it will
be during the new discussions period and during its implementation.
Listening to Social Stakeholders: The social, economic and political
sustainability of an urban project lies in the leadership of the municipal
officials and in the engagement of local social stakeholders. An urban
project formulates a reflective position on the physical space, activities
and people that inhabit, work or circulate in it and consolidates from the
collusion between the public entities and the social stakeholders involved.
We found that nobody is satisfied with the area. All yearn for a better
quality of urban space, where garbage is not part of the landscape, the
homeless people can be treated properly, people can enjoy the economic
strength of the sectors that supply the polygon, residents, workers and
users can enjoy public spaces. The prospect of being affected by the
project and being required to adapt the way of living with the space,
having to adapt to the proposed changes to the area, create insecurity
and fear. Where well-being prevails.
Ethical dilemma based on disregard of the inhabitants can trigger health
problems due the fact that they do not participate as the tender offers.
Enabling the Implementation of the Project: The proposal for the
feasibility of the Project seeks to eliminate the main conflicts and consists
of a management model with key operational instruments to project
implementation based in the Eco-bioethics references: a program based
on bioethical issues that integrated teams allying all Departments of the
City Hall with the professionals from the CONSORTIUM, the various NGOs
and Civil Society entities
THE CALL OF THE DAVUI: HERALDING AN ERA OF CHANGE
FOR THE PACIFIC
Sharon Biribo, College of Medicine Nursing & Health Sciences:
Fiji National University, Fiji Islands
[email protected]
The sounding of the "Davui" or Conch shell in the Pacific symbolizes a
calling which is unmistakable. Solemn, honorable and somewhat esoteric
in its notes, the gravity it imparts to those who have heard it is
unforgettable. The Pacific now resounds with calls of this nature: for her
people to step out of the blue waters and embrace the waves of change.
Bioethics as a concept is not new to the region, but the applications and
interpretation have taken some time to make impact. It was as if a foreign
flower had been brought to sandy shores and expected to survive – when
in reality, it was something familiar that needed the proper context,
understanding and nourishment to propagate and thrive. This paper will
take you through the Pacific: the milestones and achievements in
establishing bioethics in the region. It will outline the very real challenges
of culture and geographic isolation in shaping the landscape for change in
the region.
The College of Medicine Nursing & Health Sciences, formerly known as
the Fiji School of Medicine has been privileged to be a part of this
profound change. Through its longstanding association with organizations
such as UNESCO and the World Health Organization, much research and
capacity building has occurred over the last ten years. This paper will
highlight the significance of these foundational activities and how these
have influenced the current landscape of research bioethics in the region.
Just like the sounding of the Davui: The most profound of messages will
not have effect unless personalized for the receiver.
DECLARATION OF HELSINKI
Jeff Blackmer, Primary Ethics Advisor, World Medical Association;
Office of Ethics, Professionalism and International Affairs,
Canadian Medical Association, Canada
[email protected]
Background: The Declaration of Helsinki (DoH) is generally considered to
be the pre-eminent guiding document in research ethics for physicians
participating in research studies, and for many Research Ethics
Committees around the world. First published in 1964, it has been
updated several times, most recently in 2008. By the time the UNESCO
meeting takes place, the WMA hopes to have completed another revision
Abstracts of Oral Presentations
th
of the document, and is also planning events in 2014 to celebrate the 50
anniversary of its initial adoption.
A working group was appointed by the WMA and tasked with the revision
process. Several meetings of the group were held, and expert conferences
were organized in Sao Paulo, Cape Town, Tokyo and Washington to gain
an in-depth understanding of the perceptions and opinions of
international experts and stakeholders. The policy was also circulated for
stakeholder input and feedback and over 120 total responses were
received.
Presentation: The working group put forward the revised DoH for
potential adoption by the WMA’s General Assembly at its meeting in
Fortaleza, Brazil in October 2013. This presentation will focus on the
process followed during the review of the document, the discussions
which took place in Brazil, the final decision of the WMA’s General
Assembly and the next steps in this process. It will also review the
revisions made to the document and the ethical rationale behind these
changes.
EVIDENCE, EXPERIENCE AND ETHICS-BASED MEDICINE
Jaroslav Blahos1,2,3, Václav Vyskocil2
1
Czech Medical Association, Czech Republic
2
Charles University, Czech Republic
3
Central Military Hospital, Czech Republic
Evidence-based medicine represents a criterion of scientific medicine. The
evidence may be achieved by multiple sophisticated techniques as
imaging techniques, laboratory tests, computers and recently by
molecular and genetic studies. The results of these ultra-sophisticated
techniques are considered conditio sine qua non for diagnostics and
treatment. Medical students and young doctors have sometimes the
tendency to underestimate the classical examination and the personal
contact with the patient. At the extreme the overestimation of scientific
data lead the dehumanized medicine.
However, the art of medicine consists also in the doctor’s experience, his
“sixth sense”, and intuition. It may be argued that experience may lose its
scientific background over time but also the scientific results may give
misleading explanation over time.
Ethics-based medicine is another prerequisite of medicine. Medical ethics
has been an integral part of medicine since immemorable times and still it
is not taken sufficiently into account in the pre-graduate and
postgraduate medical education.
LEGAL ASPECTS IN EDUCATIONAL PROCESSES: DE IURE
CONDITO AND DE IURE CONDENDO
Agata Bonaudo, European Centre for Bioethics and Quality of Life –
UNESCO Chair in Bioethics Unit, Italy
[email protected]
In the light of legislation and jurisprudence there is a continuous
evolution of rights and duties belonging to professors and students.
Research and workshops take place, analyzing and debating, to overcome
main dilemmas, including ethical ones, and to deal with critical situations
arising daily at work.
ETHICAL COMMITTEES IN EUROPE
A. Bonaudo, E. Capasso, D. Faillace, R. Ferrara, N. Cannovo, M. Niola,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
The organizational structure of Ethical Committees in European Countries
differs from country to country.
The main difference concerns the establishing aspects, the rules
governing the evaluation criteria of clinical trials, the existence of specific
figures while the common denominator is represented by voluntaristic
membership.
Indeed, some Committees are independent entities with legal status
(France), others are part of the public administration (Denmark) some
others are organs of research institutes, hospitals or Universities (Italy) or
are established within private bodies and their activities are carried out
under strict controls.
47
As concerns the evaluation on criteria and the trials discipline, there are
Countries where clinical trials are submitted to only one law whereas in
others, like Italy, each aspect of scientific research is regulated by specific
norms.
In many European Countries like Turkey, a centralized procedure is
followed at national levels according to which it is the Ministry of Health
that express its judgment on the protocol under examination.
In other Countries research projects are evaluated at local (peripheral)
level.
In particular, at “local level” two typologies exist:
Regional or at district level (Belgium, Czech Republic, Finland, Latvia,
Lithuania, Netherlands, Norway, Slovenia, Sweden and Switzerland, and
the really “local level” of universities/hospitals (Italy, Bulgary, Estonia,
Germany, Ireland, Poland, Serbia, the United Kingdom, and Spain).
Almost all EU and ERA (European Research Area) countries have a
National Ethical Committee with leading functions for the other European
Countries, sometimes without any active role in the evaluation of the
trials, some other times acting as “appeal” evaluators of study projects
rejected at local level (Bulgaria, Cyprus, Denmark, Finland, France, Ireland,
Latvia, Lithuania, the Netherlands, Poland, Portugal, Switzerland, Sweden
and the United Kingdom).
In European Countries’ Ethical Committees, the layperson i.e. a member
who does not belong to the world of science and biology is present to
different extents, such as in Denmark where more than half of
Committees’ members are laypersons.
Another peculiar aspect is the number of local Committees.
Directive 2001/20EC following its principle of assigning trials to high
quality centers has eventually reduced the number of Committees in
Europe.
In Italy, Act 189/2012 dramatically reduced their number subject to the
population size (1/1.000.000) which involved a series of predictable
negative effects that will be analyzed in another paper.
OPBG CLINICAL & SURGICAL SERVICES IN DEVELOPING
COUNTRIES
Lorenzo Borghese, Cecilia De Rita, Davide Ponzi, Silvia Andena,
Children’s Hospital Bambino Gesu, Italy
[email protected], [email protected]
It is over thirty years that OPBG is deeply involved in caring actions in
favor of children in need around the world (Africa-South East Asia, South
America) with the same major objective to serve the disadvantaged and
the poorest.
It is the purpose of this paper to show best medical practice along with
high level of attention to financial issues in order to address towards
sustainability.
Most of our Programs have been incisive towards clinical and surgical care
with outreach in rural villages (Mobile Clinics), and mostly regarding
training of medical and paramedical personnel.
Bioethics come close to Programmes as renal transplantation from living
donor such as OPBG has activated in Vietnam, hematopoietic stem cell
transplantation in Venezuela or initiating a neuro-rehabilitation Centre for
disabled children in Russia.
All OPBG Projects in Developing Countries have the goal basically to
ensure health governance concerned with guaranteeing that whatever
technical usefulness exist to improve health be delivered successfully and
efficiently to all those in need.
Impartial health care in accordance to ethically positive human values as
in the treatment of congenital heart defects, hand malformation surgery
or severe movement disabilities should be and are our evolving purposes
in caring.
OPBG’s projects in developing countries have the peculiarity to aspire to
deliver the highest level of health care to everyone, with no
differentiation based on culture, ethnicity or religion. Our projects
involved for a great part partnerships and work with local organization
and local staff, in order to ensure a culturally sensitive approach to issues
connected with religion, culture and social structure. This is also the best
way to ensure a good outcome of the project. An example could be the
approach to malnutrition in the rural areas of Tanzania, where our
doctors studied how to prepare protein-rich meals based on local
ingredients and not only pills. Teaching these enriched meals to local
women had a very successful outcome.
Also, sustainability is searched within the country where we work. Highlevel medical services cannot be free of charge for all; ‘excessive aid’ is a
48
UNESCO Chair in Bioethics 9th World Conference
model that failed in most middle-income countries. In Tanzania and
Cambodia we set up a system of interview/questionnaire that can
evaluate, in a culturally sensitive way, the economic level of the family in
order to charge upon income. We would like to implement the concept
that medical services are offered to everyone in urgent need, but also
that people that have a good income can contribute to make our services
always more efficient.
THE PRINCIPLE OF AUTONOMY AND THE PRINCIPLE OF
JUSTICE ON ORGAN TRANSPLANTATION
Melania Borgo, Mario Picozzi, Insubria University, Italy
[email protected]
The major religions of the world acknowledge and promote donation and
transplantation of organs, even if they often specify that the donation is a
matter of individual conscience, a single choice.
However, because of religious reasons, someone refuses certain
conditions that make possible the procurement and the outcome of
transplant. In fact, without being contrary to the organ procurement
someone requires to keep working each life support until cardiac arrest
occurred, while someone else would like to receive an organ, but they
refuse blood transfusion.
The first ones context the criteria of brain death because of ethical and
anthropological reasons: is it ethically acceptable to ignore their request?
Usually, in case of diagnosis of brain death, the Medical Direction
convenes a Board that ascertains clinically the death. After that, every
treatment is stopped and all the machines are turned off, the law
prohibits each kind of opposition, but what about the autonomy of those
who refuse these criteria? Moreover, respecting their request there
would be fewer resources for other patients.
The second ones, instead, refuse no more something about organ
procurement, but the transfusion (if they will ever need it during the
transplant). Furthermore, even if today there are some means to prevent
the transfusion, it is not possible to exclude it with certainty. Is it possible
to accept that they refuse transfusion? Is it imaginable to exclude them
from the waiting lists due to this motivation? Satisfying the requests of
these patients, the autonomy can be protected, but what about the
principle of justice? Is it possible to find a mediation?
HUNGER STRIKES – THE LEGAL PERSPECTIVE
Malke Borow, Israeli Medical Association, Israel
[email protected]
The issue of hunger strikes among prisoners is rife with medical, ethical
and legal implications. The issue concerns the rights of the individual to
autonomy and choice versus the right (and some might say the obligation)
of the State to preserve security and the health of its residents.
The legal situation varies from country to country. Although all agree that
the basic principle requires consent to medical treatment and feeding,
they differ in their approach to prisoners whose life is in danger.
In Israel, a proposed bill was recently drafted that would allow the court
to give a physician authorization to force feed hunger striking prisoners
under certain conditions. Although the bill does not require the physician
to force feed, it is problematic in that it contravenes accepted
international law and medical ethics and shifts responsibility to the
physician to decide whether to risk the life of his patient or breach
medical ethics.
ETHICAL APPROACH AND PROFESSIONAL RESPONSIBILITY
IN WORKPLACE DRUG TESTING
R. Borriello, A. Carfora, P. Cassandro, R. Petrella, Second University of
Naples, Italy
[email protected]
The workplace drug testing (WDT) has the potential to greatly enhance
health and safety in the workplace, by discouraging people from abusing
substances and reducing the likelihood of accidents and injuries.
However, the WDT also represents a privacy violation, and may cause
marginalization of drug users, by cutting off their access to employment
or social welfare.
The Italian legislation for WDT has been introduced by Unified Conference
no. 99/2007 and Law no. 81/2008 as improvement in safety, productivity
in the worksite and public health. The legislation calls for mandatory
procedures for screening tests (I Level) on biological samples for “at-risk
workers”, performed by occupational health specialists, and for
confirmatory tests by GC/MS or LC/MS/MS (II Level), performed by
forensic laboratories.
Therefore, the application of WDT implies some basic ethical principles,
that occupational health physicians and toxicologists need to employ, in
order to avoid the violation of the workers’ rights and to prevent disputes
about professional responsibility. These include, but are not limited to:
• Right to Privacy and data protection: this is very important, since
WDT involves collecting sensitive data, both on use of drugs and about
medications taken which might influence the test result;
• Informed consent: the employee has to know, ideally prior to taking
the job, that abstinence is an expectation, and that WDT is planned;
• Quality assurance in Sample collection and screening/confirmation
testing: several critical factors can affect results, and lead to
administrative law disputes about use/non-use of illegal drugs. These
factors are numerous and consist primarily in specimen collection
procedures, chain of custody, contamination or adulteration of
samples, number of tested drugs and detection ranges, cut-off and
reliability of screening tests with regard to the differences in target
antigens. Therefore, it is necessary that WDT is conducted with
respect of analytical, legal and ethic issue in order to prevent damages
to workers through false positive results;
• Provision of addiction counseling: this may include treatment and/or
rehabilitation in positive drug test cases, distinguishing between use
or abuse, with or without dependence;
• Support in transitioning to more suitable employment if appropriate.
In this paper, some real cases are discussed, in order to highlight the
many ethical dilemmas posed by the management of alcohol and drug
problems in the workplace. These dilemmas involve a careful balancing
between the respect to involved individuals, and the obligation to
correctly manage the financial resources and to safeguard the safety of
other workers, especially when WDT involves the collecting of sensitive
data (such as the use of illegal drugs, or the assumption of medications).
In conclusion, WDT can have an important role in safety on workplace,
especially in the occupations where the employer and public is entitled to
expect the highest standards of safety and probity. Aside from this, there
is no justification for drug testing as a way of policing the private
behaviour of the workforce, nor is it an appropriate tool for dealing with
most performance issues. Even where drug testing does have a role it
should be approached with caution, and implemented in an ethical, fair,
transparent and inclusive way.
THE MANAGEMENT OF THE EMOTIONAL STRESS OF
PARENTS IN PEDIATRIC ONCOLOGY
Fabio Borrometi, Italy
The parents of children or adolescents with cancer develop situations of
high emotional stress from the time of diagnosis and throughout the
treatment. The idea that their son could die before them is so deeply
unacceptable to be approached with extreme difficulty. They live with
anguish their impotence and they feel affected in their role, primary and
instinctive, of protection of their children.
From a biopsychosocial perspective it can be said that cancer, in children,
is a family disease because it involves, directly and indirectly, all members
of the family. The parents, for their managerial, tutorial and reference
role, face a commitment that goes well beyond the simple "ensure the
best care" for their son.
Moreover it can be said that the ability of parents to cope with the
disease positively creates in the son the perception to be protected and it
improves his will to react to disease.
All health care providers who are treating children or adolescents with
oncological pathology should support the parents considering their
specific condition of emotional stress.
In particular they should be able to:
• provide the parents with clear and coherent information at different
stages of the disease
• interpret, understand and accept their emotional and psychological
reactions
• encourage them to accept the support of a psychologist
• promote the recovery of their resources and their parental role
Abstracts of Oral Presentations
•
•
•
keep in touch even during the remission of the disease
direct them towards organizations (foundations, associations of
parents, etc.) that can help them and support them in their practical
needs
assist them in the terminal phase of the disease and in the
bereavement.
TOXICOLOGICAL SCREENINGS IN SAFETY SENSITIVE JOBS:
BALANCING COSTS AND BENEFITS –
ETHICS OF RESOURCES
Federica Bortolotti, Sara Patuzzo, Franco Tagliaro, University of Verona,
Italy
[email protected]
In all the developed countries, great attention is devoted to the policies to
fight the industrial accidents, which are among the major causes of death
and disability in the population. In Italy, the reports from INAIL in 2011
account for 920 deaths and 724,094 injuries.
In this context, a possible toxicological impairment of the employee has
often been reported as a crucial problem. A direct correlation between
chronic abuse of substances and increased risk of industrial accidents,
never unequivocally proved, finds support in the toxicological data
obtained in studies on traffic accidents, in which about 30% of drivers are
found to have been “under the influence” of alcohol or drugs at the time
of the accident.
Among the different measures adopted, with the Executive Order 12564-Drug-free Federal workplace (1986), the USA introduced the toxicological
screening of the employees of the public sector. In the following years,
several other countries have adopted similar measures.
The large scale use of expensive screening tests in populations in which
the “positive” cases are represented in minimal percentage (often around
1%) poses the problem of a correct use of the economical and human
resources. The main point of concern is that, even admitting a high
sensitivity of the tests (> 90%) and a high specificity (> 90%), if the
prevalence of substance abusers in the population is very low, the
predictive value of the screening is minimal. Strategy to solve this
problem will be discussed.
BEST PRACTICES OF CAMPANIA USR
Ugo Bouchè, Regional Office for the School (Campania Region), Italy
The LSPCI (Languages for the multicultural school & multilingual curricula)
project is one of the best practices of the Campania USR (Campania
Regional Office for the school). It aimed to test the plurilingual and
intercultural curriculum in the first cycle of the school. It is a part of the
new educational strategy of the Council of Europe promoting intercultural
and multilingual education among the younger generation.
SOCIAL MEDIA AND MEDICINE: LEGAL AND ETHICAL
IMPLICATIONS
Jean-Marc Bourque1,2, Thorsten Hornung1,3, Daniel Lee1,4, Lawrence Loh1,5,
1,6
1,7
1,8
Stewart Morrison , Konstantinos Roditis , Xaviour Walker
1
Junior Doctors’ Network, World Medical Association
2
University of Western Ontario, Canada
3
Bonn University Hospital, Germany
4
Harvard School of Public Health, USA
5
Dalla Lana School of Public Health, University of Toronto, Canada
6
Barwon Health, Australia
7
Attikon Hospital, University of Athens, Greece
8
Mount Auburn Hospital, Harvard Medical School, USA
[email protected]
Introduction: The growth of social media platforms on the internet
represents both opportunities and threats to the way medicine is
practiced. In our review, we hope to address the basic legal and ethical
considerations surrounding the role of social media in the provision of
medical services.
Methods: The Junior Doctor Network (JDN) of the World Medical
Association (WMA) has recently presented a white paper on Social Media
and Medicine. Inspired by the WMA statement on the Professional and
49
Ethical Use of Social Media, this white paper explores the existing
literature, focusing among others on the legal and ethical aspects of social
media use in medicine.
Results: Social media use by physicians raises various legal and ethical
implications. Posting of inappropriate, abusive, personal, malicious or offtopic material may lead to legal sanctions and threaten the credibility of
the medical profession. Disclosure of information causing disturbance or
“substantial interference” with the provision of health care and the
permanence of digital content transmitted online may also have legal
implications. “Health-care gaps” in social media access among patients of
lower socioeconomic status, pose further ethical considerations. Specific
forms of pathology, for example “status anxiety” and other maladaptive
behaviours have also been described in this new field. “Secondary data
usage” from social media for research or public health purposes raises a
number of issues pertaining to patient privacy and confidentiality.
Conclusion: It is apparent that many of the legal and ethical
considerations in the use of social media are already reflected in the
standards and codes set out by physicians, institutions and regulatory
bodies alike. It is therefore important for policymakers and stakeholders
involved to work together to address and develop standards for
optimising social media usage and mitigating potential risk. There is a
tremendous potential in harnessing social media for health care, but
equally large potential pitfalls must be considered.
PERIPHERAL ARTERIOPATY AND DIABETIC PATIENTS IN
ENDOVASCULAR ERA: IS IT BIOETHICALLY WORTHWHILE?
Giancarlo Bracale, University "Federico II" of Naples; President, SICVE
(Italian Society of Vascular and Endovascular Surgery), Italy
[email protected]
Diabetic patients who develop peripheral artery disease (PAD) are at risk
to lose one, or sometimes both, legs: this could lead to a poorer quality of
life and could be expensive for health care system. In diabetic patient, in
case of PAD and lower limbs ischemia, revascularization, particularly with
endovascular techniques, is the best option to avoid amputation, but it is
necessary to control the underlying disease: if the patient does not
control diabetes, surgery will often be ineffective. However, even wait too
long before revascularization could lead to amputation. Endovascular
treatment is very expensive, and medical companies put a lot of pressure
on surgeons and even on patients that seek for information, but in case of
a chronic disease like diabetes, the including criteria should consider the
patient's compliance to therapy and his/her continued adherence to a
strict regimen, leading surgeons to decide between postponing a
treatment until a good control of diabetes is achieved, leaving the patient
to suffer a prolonged pain and with the risk of a poorer outcome of
revascularization, and performing an immediate surgery, relieving the
pain immediately, but with higher risk of recurrence of ischemia, need for
more revascularization and, ultimately, the same risk of losing a limb.
LEGAL STATUS OF EMBRYO IN THE CONTEXT OF STEM
CELL RESEARCH
Juraj Brozović, Vinko Galiot, University of Zagreb, Croatia
[email protected]; [email protected]
Successful application of products which contain some derivation of
human embryonic stem cells on one hand and moral doubts about such
application on the other resulted in debate which affected a variety of
fields of law. One of those fields is patent law. Such morally tainted
products caused great concerns both in the United States and European
Union. However, those two legal systems had a different idea about how
such moral question should be dealt with. Such solutions are a matter
discussed in this paper. They are observed from the point of view of the
courts of the United States and the European court of justice. While the
courts of United States deal with legal status of embryo in substantive and
procedural sense, determining whether it should be considered a thing, a
person or should it be observed as an interim category, the European
Court of Justice deals with recent legislation and standpoints on
patentability of the inventions involving embryonic stem cells and
influence of ethics on the patent law. Although they discuss different
matters, their opinions show the diversity of views about embryos, ethics
and law.
50
UNESCO Chair in Bioethics 9th World Conference
SOME ETHICAL ASPECTS IN MEDICAL & CLINICAL RESEARCH
1
2
Vlad Brumfeld , Rodica Feraru
1
Weizmann Institute of Science, Israel
2
Abarbanel Mental Health Center, Israel
[email protected]
The quality of the medical research may be adversely affected by subtle
ethical issues about which the researchers may not be aware. From
choosing animals for experiments to processing the data obtained from
sophisticated measuring instruments, every work stage leading to a
research article may be affected by ethical shortcomings.
Because the possible problems cover a wide range of fields, we are going
to present issues related only to two unrelated domains: excessive use of
statistics and over- processing of images.
The first part of the presentation will focus on the use and misuse of
statistical methods in medical research. We are going to point out that
clinical trials and subsequent statistical studies are essential, but they
have to be conducted only after the biochemical paths and/or
pharmaceutical activity are known in detail.
Imaging methods became lately one of the main tools of medical and
clinical research, but image processing and analysis has not yet become a
common place. The second part of this work will describe some potential
ethical problems that may arise from over processing or wrongly
processing images. Some examples of such potential problems will be
discussed.
DENTAL CARIES IN CHILDREN: SIGN OF ABUSE BY NEGLECT?
Claudio Buccelli, Aniello Ingenito, Pierpaolo Di Lorenzo, University of
Naples “Federico II”, Italy
According to epidemiological studies, dental caries affects 80% of the
population in industrialized countries.
In Italy, with a focus on the youngest cohorts, this disease affects 20% of 4
year-old children and 44% of 12 year-old children, with an international
severity index (DMTF: decayed missing filled teeth) of 0.81 and 1.09,
respectively.
A survey on a sample of 101 subjects from Campania aged between 3 and
18 revealed a 81%-prevalence of dental caries in this population, with a
DMTF score as high as 18 in permanent and 12 in baby teeth.
The research also showed that high DMTF scores correlate with poor oral
hygiene, low socio-economic class, poorly educated mothers and
unavailability of school canteen services.
Based on this evidence the clinical observation of dental caries involving
several teeth and extending to deeper tissues can legitimize the
hypothesis of passive abuse (by neglect) or, as an alternative, of social
disadvantage for economic and/or cultural reasons, favored by the
absence of public healthcare – in the vast majority of the Italian regions,
primary and secondary prevention of dental caries and treatment are not
included in DRGs.
Neglect is by far the most frequently observed form of child abuse (50%)
that translates in failure to meet primary physical and medical needs,
affective deprivation and abandonment of subjects who are incapable of
tending to their own needs, which is the case of very young children.
The relevant literature shows that failure to offer the necessary dental
treatment to a child has major short-term and long-term consequences
on his/her health. Therefore, in case of suspected neglect, dentists are
morally and legally obliged to report the case to the concerned authorities
in the interest of the child.
In consideration of the above, our paper wants to offer a scientific
contribution aimed at promoting the awareness of specialists that signs of
children dental health can be telltale of neglect and at encouraging public
health authorities to consider dental caries prevention and treatment as
basic healthcare.
TEACHING BIOETHICS IN MEDICAL SCHOOLS
C. Buccelli, M. Niola, D. Del Forno, P. Di Lorenzo, M. Paternoster,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
This paper examines the reasons why the teaching of Bioethics and, more in
general, of Medical Humanities fits well in the degree course in medicine.
The continuous progress of biotechnologies applied to healthcare and the
impact they had on humans, the multitude of values of the society where
we live, health care provided in an impersonal and technicist way
sometimes, claims by patients of their decision-making autonomy,
constitute the substrate which has imposed a profound reflection on the
ethos of the medical profession.
In our experience modern medicine requires the promotion of an acute
awareness of moral problems in biomedicine. Since the beginning of their
degree course, is it therefore necessary to guide students of medicine and
surgery to a conscious use of conceptual, logical and cultural tools which
are required to cope with ethically difficult situations and to rigorously
adjust their positions on the matter. Just think for example of the
complexity of clinical situations related to birth and death.
Such training aims at maturing in the future physician the awareness of
his/her own professional role, by conveying theoretical information in the
field of ethics, and by training them to discern and rationally manage the
ethical problems they will encounter both in clinical practice and in
scientific research.
A therapeutic act is not only the “restitutio ad integrum” of an organ or
the normalization of laboratory parameters, but rather it is taking care of
the health of a person while taking charge of his/her suffering within and
interpersonal doctor-to-patient relationship which is the core essence of
medicine.
Bioethics, in its triple biological, anthropological and scientific articulation,
in this regard offers an essential perspective of synthesis to the end of
evaluating the quality and the extent of the acts of care the ultimate
purpose of which is the promotion of the wellbeing of those who suffer.
A course in Clinical Bioethics and Medical Progress was established at the
School of Medicine and Surgery at the University of Napoli Federico II in
2004. It is a course for students in the first year of the degree course in
the School of Medicine with the main aims of offering theoretical
knowledge in the field of ethics, of training students to discern and
rationally manage the ethical problems they will encounter in their reallife research situations and clinical practice, and of promoting the human
and professional qualities of students.
The course consists of 40 hours of class teaching, entrusted to teachers
with juridical, medical and ethical education from university structures
external to the University of Napoli Federico II, as well as of workshops for
small groups of students where real cases and real-life personal
experiences are discussed.
To date there has been a high rating by the students attending, 70% of
whom passed the final exam with high marks.
HARVESTING CADAVERIC TISSUES FOR THERAPEUTIC
TRANSPLANTATION AFTER JUDICIAL AUTOPSY:
THE PRIMACY OF ETHICS IN A CLIMATE OF
REGULATORY UNCERTAINTY
C. Buccelli, S. Romano, C. Vosa, M. Niola, International Office for Bioethics
Research of the European Center for Bioethics and Quality of Life of the
UNESCO Chair in Bioethics Unit - Ethics Committee “Carlo Romano”,
University of Naples Federico II, Italy
In Italy the norms on cadaveric organ and tissue transplant have evolved
through such a complicated process that nowadays the regulation is
neither homogeneous nor fully applicable.
We refer in particular to the so-called “silence-means-consent” law (L.
91/99) that states that failure to expressly declare willingness to donate
equals consent to donate.
Since no register of donors has yet been established, the temporary
measures are still in force, which annuls the effect of donation promotion
expected by the law itself.
The regulation on tissue harvesting for scientific research purpose or
therapeutic transplant from cadavers undergoing judicial autopsy is
particularly uncertain and undefined.
In this framework some perplexities were raised as to a joint project of the
Forensic Medicine Unit and the Heart Surgery Unit of the University Hospital
Federico II of Napoli, consisting in harvesting aortic and pulmonary valves
for transplants from cadavers undergoing judicial autopsy.
Cardiac valves, treated with antibiotics and preserved at low
temperatures, are potentially valuable biological prostheses (very reliable
and low-cost) to be used as an alternative to synthetic prosthetic devices.
Part of the forensic literature maintains that harvesting tissues from
cadavers undergoing judicial autopsy does not require any consent by the
Abstracts of Oral Presentations
subject as art. 10 of the Regulation applying the law L. 644/75 is still in
force; other authors are convinced that utilising these samples for
purposes other than diagnosis/autopsy is not allowed.
In this normative uncertainty, the EC has decided that ethical
considerations shall prevail and that the general rules regulating cadaveric
organ transplants are applicable also to organs harvested from cadavers
undergoing judicial autopsy.
In this way the circumstances of the death do not affect the fate of the
cadaver and the possibility that the defunct had expressed denial or the
family (duly informed) might oppose to donation is taken into
consideration.
This orientation has been received by the Judicial Authorities and when
judicial autopsy is required the judges check for any opposition or
condition to explant and, if it is the case, authorise the harvesting of
tissues for transplant during autopsy.
Thanks to this procedure it has been possible to solve a juridical dilemma
by applying a rule with a strong ethical connotation to allow for a
biomedical activity that has a high social value.
INSURANCE COVERAGE IN CLINICAL TRIALS IN THE
EXPERIENCE OF THE ETHICS COMMITTEE FOR
BIOMEDICAL ACTIVITIES “CARLO ROMANO”
P. Buccelli, I. Amirante, M.A. Zinno, D. Faillace, P. Di Lorenzo,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
Regulatory provisions aiming at guaranteeing an adequate insurance
coverage of those participating in clinical trials have evolved slowly over
time.
There was a change from the initial equivocal and improper definition of
coverage for compensation of damages, which is typical of material
liability and therefore not consistent with the reality and needs of civil
liability, although in the medical field, to the definition of damages, but
nothing has been specifically regulated in terms of maximum coverage,
deductibles and timing.
Later the Ministerial Decree D.M. 14/7/09 “Requisiti minimi per le polizze
assicurative a tutela dei soggetti partecipanti alle sperimentazioni cliniche
dei medicinali” (Minimum requirements for insurance policies to protect
the subjects participating in clinical trials of medicines) entered into force.
The Ministerial Decree represented a huge step forward on the road
towards a uniform and adequate coverage of people participating in
pharmacological research trials.
Later on, however, a new element of decision-making difficulties came
about in Ethical Committees with reference to the more and more
massive and widespread exclusion from insurance coverage of damages
due to a growing number of drugs already on the market ((isotretinoin or
acculane;
diethylstilbestrol
(DES);
l-tryptophan;
fenfluramine,
phentermine; talidomide; phenylpropanolamine; ephedra, ephedrine;
cisapride; Bis(2ethylexyl)phtalate (DEHP); bupropione; diazepine,
oxazepine, tìazepine; dexfenfluramine; risperidone; remoxipride;
hydroquinone; statins (HMG CoA reductase inhibitors); retinoids; fibric
acids and their derivatives; products and preparations for impotence;
biogenerìc drugs; Cox-2 inhibitors; neuromuscular blockers; seizure
medications, dopaminergic drugs; hydorxyquinoline and their derivatives;
latex; silicone; tobacco; mercury; contraceptives).
We deemed it interesting conducting a study on the congruity with the
most recent provisions of insurance certificates enclosed with trial
protocols submitted to the Ethics Committee “Carlo Romano”. It is
necessary to keep into account that the insurance coverage guaranteed in
a trial is in itself an indicator of ethicality of the same trial.
In the past three years, between the above-mentioned D.M. entering into
force in 2010 and April 2013, modifications have been requested to the
insurance policies for 191 protocols out of the 732 submitted to the Ethics
Committee, as they did not meet the legal requirements of protection of
people participating in the trials.
For the most part (65% of trials) it was necessary to request the inclusion
of the list of pharmaceutical drugs which, if taken, would lead to the
exclusion from the insurance coverage, into the forms of informed
consent to the trials. In several cases (14%) the insurance certificates
submitted did not meet the provisions of Law (language other than
Italian; exclusions were not specified; there were deductibles; inadequate
maximum coverage and period of coverage). Sometimes (in 8% of cases)
it was necessary to request the insurance certificate, which had not been
51
submitted. Other times (6% of cases) the Promoters were formally invited
to adopt adequate insurance coverage.
Multiple insurance inadequacies were found in several research
protocols. Seven out of the 191 protocols, which modifications had been
requested for, were rejected for failure to comply with the requests for
changes made in relation to inadequate insurance coverage.
The results of our study reinforce our belief that damage compensation
guaranteed to people participating in a clinical trial, by means of a
suitable insurance policy, is an essential protection tool for an appropriate
balance between ethical values, clinical risks and economic interests.
SELF-DETERMINATION IN INTERVENTION WITH
ARAB BATTERED WOMEN IN MEDICAL COMMUNITY
CLINICS IN ISRAEL
1
2
Eli Buchbinder , Rouzin Barakat
1
University of Haifa, Israel
2
Meuhedet Health Care System, Israel
[email protected], [email protected]
Women experiencing intimate violence seek medical help up to 2.5 times
more often than other women. Hence, the likelihood that medical staff
will encounter these women is high. The universal rather than stigmatic
nature of community medicine enables interaction with these women,
especially in collectivistic societies in which patriarchal values are
dominant and in which women are subject to social control. This is the
reality of many Arab women in Israel.
The presentation is based on a qualitative study, which consisted of 24
interviews with 12 Arab battered married women, who sought help in
community medical clinics in Israel. The interviews were conducted at two
points in time; the first at the initial contact with the social worker and
the second approximately three months later. A central theme that
emerged from the interviews was the women’s wish to maintain their
self-determination in the encounter with the community medical clinics
social workers regarding their coping with the violence. The women
expected to retain the power to determine the boundaries of the
intervention within the professional relationship, which included
maintaining the exclusive privilege to choose the plan of action. The
discussion will focus on the consequences of maintaining the women’s
self-determination from the ethical point of view in their relationship with
the health service professionals – empowering them on the one hand,
and limiting them on the other.
THE TRIANGLE OF DEPENDENCE IN STEM CELL SCIENCE:
THE IMPACT OF LAW, ETHICS AND SCIENCE ON
STEM CELL RESEARCH AND THE PHENOMENON OF
STEM CELL TOURISM
Bianca Buechner, Indiana University Center for Bioethics, USA
[email protected]
Law and ethics regulate stem cell research and the treatment with stem
cell therapies in most parts of the world. Public attitudes form policies
and legal frameworks. Specifically, the interaction between law and ethics
and the use of ethics to justify legal standpoints and legal decisions play a
major role when regulating stem cell research and the use of stem cell
therapies. In this regard, the recent European Court of Justice (ECJ) case
Brüstle v. Greenpeace e.V. (Case C-34/10, 2011) will be compared to the
US Court of Appeals for the District of Columbia Circuit case Sherley et. al.
v. Sebelius et. al. (610 F.3d 69; 686 F.Supp 2d 1; 644 F.3d 388; 776 F.Supp.
2d, 2012) concerning embryonic stem cell research as a case study. These
decisions demonstrate how law and ethics can influence science itself and
its governing policies. In addition, this project explores the impact that
these two decisions can have on the phenomenon of stem cell therapy
tourism (so called medical tourism).
To conduct such research, the different legal and ethical influences will be
emphasized which not only affect stem cell science policy and legislation,
but also stem cell research and stem cell tourism itself. This analysis is
indispensable for developing a sufficient international stem cell research
and therapy policy strategy. Law, ethics and science shape the necessary
triangle of dependence on the way to international consistency in stem
cell research and stem cell therapy tourism.
52
UNESCO Chair in Bioethics 9th World Conference
A CALL FOR CONSENSUS IF THE AIM IS PROTECTION:
REVIEW OF VULNERABILITY IN RESEARCH
1
2
Daima Bukini , Jon F. Merz
1
Muhimbili University of Health and Allied Sciences, Tanzania
2
Perelman School of Medicine at the University of Pennsylvania, USA
[email protected], [email protected]
Background: Bioethicists have yet to reach consensus on the definition of
vulnerability, nor on the categories of vulnerable groups. This interferes
with the development of specific regulations to protect the vulnerable
groups from exploitation.
Aims: This paper provides a comprehensive review and assessment of the
categories of vulnerable groups in research based on the different
arguments and proposals made by bioethicists with the goal of building a
comprehensive framework for addressing the characteristics of, and
policy responses to address, research vulnerability.
Methods: Systematic literature review conducted of articles published
from 2000 - 2013; to ensure a comprehensive search, we used broad
search terms like vulnerability in research. Databases searched included:
EBSCO, JSTOR, PubMed and Medline and Google Scholar.
Results: Findings from the review indicate that all the proposals are
speaking on the same thing using different terminologies. The most
efficient way to categorize vulnerability should either be on economic or
cognitive bases. Guidelines and regulations to protect vulnerable groups
can originate from that distinction.
Recommendations: Bioethics discourse on research vulnerability has
been mired in problems of definition, with focus often on distinct groups,
what makes them vulnerable and what can be done about it. We find that
the characteristics of vulnerability are often shared amongst groups, and
turn our attention to developing mechanisms to protect vulnerable
groups from exploitation.
BIOETHICS AND OCCUPATIONAL SAFETY IN GENDER'S
STUDIES
Isotta Burlin, Mariano Paternoster, Pierpaolo Di Lorenzo, Massimo Niola,
Claudio Buccelli, Università Federico II di Napoli, Italy
[email protected]
Analyzing the theme of occupational safety in gender's studies allows to
understand problems not yet solved in the field of equal opportunities,
despite the undeniable positive developments introduced in the Italian
Law by the "Consolidated Act on occupational safety and health"
(Legislative Decree 81/2008) which considers the latest European
Guidelines.
In Italy there is still a lot to do in order to reach equality, not intended as
refusal of differences, but intended as equal opportunity to access to
rights and services, as it can be seen in the latest INAIL (National Institute
of Work-related Accident Insurance) dossier dedicated to women's
occupational safety and health "Women, working safely" (7 March 2013).
The dossier demonstrates that women are less exposed to injuries on
workplaces than men but more exposed to injuries while coming back
home from work.
There are different reasons: in Italy women have different needs and risks
than men, women find often part-time, occasional or less remunerated
jobs, women have less chances to career advancement than men, women
suffer from gender inequalities because they spend more time on looking
after the family and doing the housework. All these factors add extra-risks
which have repercussions on working life.
It is certain that we need an alternative and innovative approach to solve
the problem of women's occupational safety and to improve their access
to equal opportunity: Bioethics has a fundamental role in reaching that
goal.
With its multidisciplinary approach Bioethics is not aimed to solve and
reject the actual differences between women and men. On the contrary,
Bioethics is open to pluralism, different ideas and opposing opinions:
thanks to a respectful debates new points of view can be examined, not
limited to a theoretical approach but extended to practical consequences
aimed at changing the status quo and at finding a flexible balance
adaptable to everyday life.
THE STUDY OF MASSIVE PSYCHIC TRAUMA AND
RESILIENCE IS FUNDAMENTAL FOR ETHICALLY INFORMED
PSYCHIATRIC DIAGNOSIS, TREATMENT, AND FORENSIC
EVALUATION
1
Harold J. Bursztajn , Omar S. Haque
1
Harvard Medical School, USA
[email protected]
The current controversy regarding the American Psychiatric Association's
Diagnostic and Statistical Manual (DSM) points to a variety of significant
gaps that need to be independently addressed. The National Institute of
Mental Health has taken the lead in addressing the need for biomarkers.
There is a deeper need, one this group may begin to address, to create a
more valid biospychosocial, narrative-based training manual for
psychiatric diagnosis, treatment and forensic psychiatric evaluation.
Among the relevant omissions in the DSM is the neglect of any systematic
approach to Massive Psychic Trauma and its interaction with character
development and resilience.
The Lodz Ghetto (1940-1944), created for the enslavement, starvation,
and transit to extermination of Jews during the German occupation of
Poland, offers a crucible of how character may develop and manifest itself
in the context of massive psychic trauma. Whereas the transgenerational
transmission of guilt and other forms of suffering is well described in the
literature, the heritage of resilience is little studied.
One of the clinician author’s parents' (HB) experiences in the Lodz Ghetto
resistance will be used as a starting point for understanding how patients
and their caregivers, both professional and family, can respond to and
develop in the face of helplessness, hopelessness, and horror. Examples
from that author’s forty years of practice experience as a psychiatrist,
psychoanalyst, and forensic psychiatrist will be discussed. This will be
followed by a discussion by the clinician author in training (OH) as to the
relevance of resiliency awareness for bioethically informed clinical
training and continuing education programs.
CURRENT LEGISLATION IN THE FIELD OF
PREIMPLANTATION GENETIC DIAGNOSIS IN EUROPEAN
UNION MEMBERS
Francesco Paolo Busardo1, Paola Mancarella2, Matteo Gulino2,
Gianluca Montanari Vergallo2, Silvia Zoppis2, Paolo Procaccianti3
1
University of Catania, Italy
2
Sapienza University of Rome, Italy
3
University of Palermo, Italy
[email protected]
Preimplantation genetic diagnosis (PGD) is a diagnostic technique,
adopted to detect genetic diseases or characteristics in embryos obtained
after in vitro fertilization, prior to implantation. Taking into account the
continuous progresses in the area of Medically Assisted Reproduction,
which has generated a surplus of laws and ethical and social debates,
undoubtedly PGD represents a rather new medical field and constant
developments in medicine and new opportunities continue to defy the
attempt to respond to those questions.
In this work, the Authors reviewed the current legislation in the 27 EU
Member States trying to evaluate the different legislation pathways
adopted over the last 15 years and highlighting the different positions of
each Member, which show in several cases a process still open and far
from being completed. Numerous EU countries do not have laws that rule
PGD procedures, but only in certain cases (CY, IE, etc.) “Guide lines”,
which not fully analyse this important field of medicine, leaving numerous
unsolved issues.
Among those EU Countries with a specific legislation regarding PGD, very
different positions have been showed; from a liberal approach in BE, GR,
UK, ES etc., in which the access to PGD is allowed and the selection of the
embryo’s sex can be carried out when there is a medical indication of a
risk for a sex-related hereditary disease. In other countries such as DE,
only recently (February 2013) a rule regulating how PGD can be used in
practice, has been approved, after that the usage of PGD was in a legal
grey area for a long time. Finally, there are those Countries, e.g. IT, in
which a restrictive interpretation of Article 13 of Law 40/2004 has led to
deny infertile couples with genetic diseases the right to seek PGD
although the Italian Constitutional Court has more times expressed the
unconstitutionality of the rule.
Abstracts of Oral Presentations
FROM BONIFACIO’S SERUM TO STAMINA METHOD:
THE “OVERPROMISING” OF ALTERNATIVE THERAPIES
Fabio Buzzi, Giacomo Tassi, University of Pavia, Italy
[email protected]; [email protected]
From Bonifacio’s immunomodulant serum of the ‘50s to Di Bella’s anticancer multitherapy of the ‘90s up to Stamina method against
neurodegenerative diseases of our time, history seems to be repeating
following courses and recourses. In fact, the protagonists are always the
same: a “creative” pseudo-science (that is opposed to by official science),
seriously affected patients and their relatives and, eventually, judges
(again the protagonists of ordinances and contradictory judgments). And
within the complexity of these events also thorny dilemmas - belonging to
the ethical-juridical universe - appear identical and recurrent,
synthesizable along these lines: what does therapy freedom mean? Is it
tolerable a “tout cour” right to health built on pietas and on human
compassion, and not on the rules of clinical experimentation and on
proved therapeutic efficacy? Is there a State reason that can impose
political and autoreferential decisions aimed at silencing “social
tensions”?
Exactly by appealing to the so called “compassionate therapies”,
regulated in our Country by the Turco-Fazio decree, an Onlus (“Stamina
Foundation”, established by Prof. Davide Vannoni, professor in the
humanistic field) supplies treatments with mesenchymal stem cells to
patients affected by pathologies that at the actual state of bio-medical
knowledge are unanimously considered to be irreversible (muscular
atrophy, connatal cerebral paralysis, ALS, Nieman-Pick’s syndrome).
These treatments are not only devoid of the necessary protocol
validation, but moreover they have been forbidden by AIFA in May 2012.
Nevertheless, thanks to courts’ intervention, to which patients addressed,
the prohibition has been bypassed “by judgment”, raising diffused stances
on the matter in the medical world.
In the shade of the noisy medical-judiciary-governmental querelle there is
the fact that the fragility and the hopeful credulity, especially when
medicine based on evidence (EBM) is forced to betray the expectations of
a satisfactory helpful outcome, are easy preys of alternative offers that
are now “simply” visionary, now more and more reproachfully
commercial.
Hence, there is to wonder to what extent bioethics, even before AIFA,
inquiring magistrature and governmental organs, can and should make its
voice heard, in expected consonance with that of deontology. Is it
respectful to the cornerstone of ars medica – “primum non nocere” – not
contrasting therapies that distance themselves from the consolidated
safety and efficacy regulations of the medicine based on evidence? Is it
good politics not only not carrying out, but even not formally allowing the
execution of treatments that its own technical organs (those of the Health
Minister: read AIFA) judge – reasonably – ineffectively and dangerous?
And, on top of all, does this type of therapies reply to the fundamental
criteria of benefit and not discomfort (“maleficity”) that with priority have
to apply to every biomedical treatment?
Our communication aims at analyzing critically this complex context.
THE ETHICS CONSULTATION: WHICH ROLE IN BIOBANKS
GOVERNANCE?
1
1
2
Luciana Caenazzo , Pamela Tozzo , Renzo Pegoraro
1
University of Padua, Italy
2
Fondazione Lanza, Italy
[email protected], [email protected], renzo.pegoraro@
fondazionelanza.it
Starting from our experience of ethical counseling problems related to the
governance of biobanks, this work deals with ethical considerations in this
field. The role of ethics consultation (as a single consultant in
collaboration with the ethics committee) in the conflicts or dilemmas
generated by the biobank’s management in public institutions deserves to
be explored.
Biobanks typically collect and store biological samples they are not static
“projects”, since biological materials and data are usually collected
continuously with defined and/or future research projects at the time of
biospecimen collection. Because their governance should also serve to
protect donors’ rights and stakeholder interests, we deepen the role of
the ethics consultation in planning, managing and solving the ethical
issues that are still involved in the biobanks’ governance. Although
53
informed con sent remains one of the most contested issues of biobank
policy, other ethical challenges also still require careful attention: these
include the protection of vulnerable subjects, the safeguarding of privacy,
the communication to donors of research results, conflicts over patenting,
access, and the need for open science, and the rights of donors to retain a
property claim or control over their tissues. Furthermore the ethics
consultant may be involved in a campaign of ethical education to ensure
that all researchers involved in biobanks are aware of their ethical
responsibilities, and donors are better equipped with an ethical
understanding of donation significance.
MIND AS AN EMERGENT PROPERTY
Pietro Calissano, University of Tor Vergata, Italy
For centuries philosophers have discussed about the origin and nature of
mind processes such as memory, emotions, consciousness. The
impressive, explosive growth of neurosciences provides new pathways to
visualize mind as an emergent process of brain activities which could also
have an impact on social events.
BIOETHICS IN CONTEMPORARY CINEMATIC NARRATIVES
1
1
Irene Cambra Badii , Alejandra Tomas Maier , Andrea Hellemeyer
1
Universidad de Buenos Aires, Argentina
2
Pontificia Universidad Javeriana de Colombia, Colombia
[email protected], [email protected],
[email protected]
2
This work studies how the articulation of ethics in contemporary
cinematic narratives enables us to study the power of thought.
Cinema, as a narrative, can provide material for discussion in relation to
different clinical fictions, from its interpretation. There are multiple ways
to understand a film according to the viewer’s interpretation. This
proposal broadens the understanding of problems considering successive
complexity matrices. Those matrices include not only what is established
by the particular moral or "to be", but also some singular dimensions that
act to supplement the established so far. All of them, including the
subjective components, are looked at analytically.
The research consists in using audiovisual material and other forms of
contemporary bioethical narrative, to empirically survey concepts in the
face of critical situations in the practice contemplated in the UNESCO
Declaration. The objective of this research is to investigate in what
manner the Universal Declaration of Bioethics and Human Rights
(UNESCO, 2005) has contributed towards the articulation between Ethics
and Human Rights in controversial scenarios in professional health care,
offering ways to access the degrees of complexity present in different
current and ethically controversial situations.
INTUITION IN CLINICAL REASONING
Laura Leondina Campanozzi, Giampaolo Ghilardi, FAST – Istituto di
Filosofia dell’Agire Scientifico e Tecnologico, Università Campus BioMedico di Roma, Italy
[email protected], [email protected]
The aim of this work is to address the concept of intuition and the role it
plays within clinical reasoning from a philosophical point of view. We
argue the necessity of a better understanding of this cognitive tool for the
possibility of sound clinical practice.
The present research is organized in three main sections.
The first part shows how intuition is a basic requisite in clinical reasoning,
in particular in the intellectual process of hypothesis generation. Drawing
upon both Popper’s “hypothetic–deductive” approach and Wittgenstein’s
“seeing as” conception, we point out that the hypothesis formulated by
the physician are unavoidable and crucial in identifying of a specific
problem.
In the second section, we examine intuitive dimension and its major
features, starting from the review of the main philosophical perspectives
and of same emblematic cases studies. We acknowledge the scientific
dimension of intuition, so as to rid it of the prevailing uncritical
perception.
Finally, the third section outlines our interpretative proposal in terms of
an “ecology of intuition”: a way of articulating the understanding of the
54
UNESCO Chair in Bioethics 9th World Conference
same, which considers and describes both the context in which intuition
arise, as well as its content or “intentioned object”. We exemplify this
new approach supporting the need to go beyond two extremes. On the
one hand, the “anarchical” conception of intuition, that is to say, the idea
that it is not possible to establish the conditions that favour its
emergence, on the other hand, “the economization” of intuition which
refers to its “translation” into a merely quantitative dimension.
THE EVALUATION OF ‘MALPRACTICE’ IS ALWAYS CARRIED
OUT PURSUANT TO THE CODE OF ETHICS?
Sara Campilongo, Alessandro Feola, Bruno Della Pietra, Second University
of Naples, Italy
[email protected]
This reflection doctrinaire stems directly from the professional
commitment that today, on a criminal and civil plan, it is becoming
increasingly burdensome for the multiplication of disputes about
responsibility medical professional from ‘malpractice’ in which, in our
opinion, can be seen a role yet in second floor of the Orders of Medical
Doctors in the evaluation – under the Code of Ethics – of a ‘correct’
relationship between its members, a local and national level.
This ‘lack’ of the Professional Association intervention has resulted, in
time, a widening of ‘Defensive Medicine’ and the rise of associations, such
as the AMAMI and ARITMIA, whose mission is to contrast the frivolous
lawsuit (manifestly unfounded complaints toward the doctors) advanced,
often, on the basis of technical reports written by other doctors where is
hardly indicated the technical professional error and where it is often
unearths the unconscious and indifferent attribution of negligence,
carelessness and incompetence.
It has been recently presented in Milan (September 2011) a document of
‘self-regulation’ inherent “Standards of behavior in the activity medicolegal” drafted by AMLA.
It is fully endorsed this document of ‘self-regulation’ that indicates a
‘path’ to follow in order to reduce the ‘lack’ in the institutional activities
of Professional Associations in careful and proper application of the art.
62 of the current Code of Ethics; this ‘path’ could limit the proliferation of
‘frivolous lawsuit’ through the application of disciplinary sanctions, at the
very least, can be traced the behavior of many consultants to respect the
wording of this article for which you require the association to the
medical examiner to a specialist of the same disciplinary sector of whom
is believed to have incorrectly for ‘malpractice’.
WOMAN'S RIGHT TO REFUSE TREATMENT DURING
CHILDBIRTH
Zuzana Candigliota, Czech Republic
Patient's right to autonomy in decision-making on health care is a
traditional issue in bioethics and law. However, insufficient attention has
been dedicated to this issue in women's deciding in connection with
childbirth. Possible explanation is that maternity care is dominated by
significant medical paternalism reasoned not only by protection of
mothers, but also unborn children. On the other hand, pregnancies and
deliveries are increasingly medicalised and some women reject such an
approach.
In recent years, first litigations concerning the right to refuse
interventions during labor and postpartum hospitalization has appeared
in the Czech Republic. Also the European Court of Human Rights began to
address women's rights in connection with childbirth.
I analyze case law in this field and possible trends in the future. I dedicate
attention particularly to case Ternovszky at European Court of Human
Rights and its impact on women's freedom of choice in maternity care.
Furthermore, I interpret the Convention on Human Rights and
Biomedicine and other conventions that address possible limits of
women's freedom. I give attention to concepts of human dignity and illtreatment. According to the Special Rapporteur on torture, Juan E.
Méndez, involuntary medical care often meets the features of prohibited
ill-treatment.
My conclusion is that limiting the right of women to make decisions
during labor is questionable because of possible interference with their
dignity. Involuntary interventions during childbirth will increasingly be
seen not only as an interference with the women´s right to privacy, but
also as inhuman and degrading treatment.
“EVIDENCE-BASED MEDICINE” AND “GOOD CLINICAL
PRACTICE” IN MODERN MEDICINE: ADVANTAGES OR
PROBLEMS FOR THE PATIENT?
N. Cannovo, F. De Micco, A. Tuccillo, L. Paciello, M. Niola, International
Office for Bioethics Research of the European Center for Bioethics and
Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics Committee
“Carlo Romano”, University of Naples Federico II, Italy
Evidence-Based Medicine (EBM) was defined as “the process of pursuing,
evaluating and systematically applying the results of contemporary
research as the basis for clinical decision-making”. The rules of Good
Clinical Practice (GCP) define an international ethical and scientific quality
standard in designing, conducting recording and reporting on clinical
studies involving human beings, to the end of guaranteeing the safeguard
of the rights, the safety and the wellbeing of the people participating in
the study, in conformity with the principles laid down in the Declaration
of Helsinki and in its following modifications.
Both the above-mentioned tools synthesize the large amount of
information produced by the scientific community, and as such are
valuable aids in the diagnostic and therapeutic decision-making process.
EBM and GCP undoubtedly have the merit of guiding to the exclusion of
clearly useless or harmful procedures. However, the topic of this paper is
the consideration that we cannot overlook the risks of their misuse.
As a matter of fact, both EBM and GCP have a structural bias, as they are
the results of limited studies in terms of coverage of the sample analyzed,
and also because they have been developed on the basis of statistical
evaluations which can be applied to whole populations and not to single
subjects, and thus they are limited tools in their applications to single
cases.
Moreover, it is to be considered that EBM and GCP have become the
“stone guest” in legal litigations for medical malpractice as they have
become the “protection shield” of physicians in some cases and the
“weapon of attack” of patients in others.
In our opinion the initial definition by Sackett et al. should be restored
and enhanced, according to which EBM and GCP are to be used as the
“basis for clinical decisions”, as the indispensable educational tool for
healthcare workers, and as effective support in healthcare policy
decisions but still “the basis”.
EBM and GCP instead cannot replace the therapeutic alliance between
doctors and their patients, which is the core essence of their relations,
and which guarantees the best available therapy to patients and allows
physicians to apply what they consider the most useful diagnostic and
therapeutic approach to each single patient.
On the other hand, an uncritical adherence of doctors to the best
evidences of efficacy and to the recommendations of guidelines cannot
but prevent them from making gross errors, but it cannot be a guarantee
for them to have operated in the best interest of the patient and in the
most appropriate manner from the ethical and deontological point of
view.
THE ROLE OF INTERNATIONAL STAKEHOLDERS IN GENETIC
RESEARCH
N. Cannovo, V. Folliero, A. Russo, E. Meccariello, V. Graziano,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
Genetic research aims at improving public health by in-depth knowledge
and analysis of the human genome.
New technologies useful to predict monogenic diseases and common
pathologies caused by interaction of genetic and environmental factors
have been rapidly developed.
The WHO, the UNESCO and other international organizations play a key
role in the correct integration of genetic research and public health.
Nevertheless, there can be negative repercussions from genetics in case
of misuse or unauthorised use of genetic information.
Therefore, all the subjects dealing with the collection, preservation, use
and management of genetic information (stakeholders) should jointly and
constantly reflect on what is ethically required, acceptable or nonjustifiable in every action (policies, research programmes, etc.) pertaining
to public health and genomics.
The stakeholders represent the points of view of subjects with different
values and cultures and can play as mediators in international contexts.
Abstracts of Oral Presentations
Over the past few years multinational associations and entities dealing
with genetic issues have mushroomed thus disseminating ideas and
proposals internationally.
One example is P3G Consortium, a non-profit international organization
collecting information on activities carried out in the field of populations’
genetics, in order to design and harmonize research strategies since the
interpretation of the role of genetics is not homogeneous in the various
European countries. New professions are also emerging, such as the
expert in European genomic policies or the expert in creation and use of
databanks. The stakeholders will play a key role in protecting citizens’
rights in this scenario and in avoiding the risk of a genetic apartheid.
Disclosing genetic information may bring about a high cost in
psychological and social terms because of the risk of discrimination and
biased public perception of a person.
In our grossly deterministic society, a special significance is attributed to
the genetic features of a person. The stakeholders shall guarantee every
single citizen is protected from a misuse of genetic information, limiting
its treatment to therapy or to justified circumstances such as scientific
research.
REGIONAL DIFFERENCES IN CANCER SURVIVAL OF
PATIENTS: ETHICAL PROBLEMS OF HEALTH POLICY AND
CLINICAL GOVERNANCE
Michele Capasso3, Rosalba Caldarazzo2, Dario Capasso3, Aldo Capasso1
1
IRCCS San Martino – IST National Institute for Cancer Research, Italy
2
AORN Santobono-Pausilipon, Italy
3
AOU Federico II, Italy
[email protected]
The cancer deaths in Italy constitute about 30% of all deaths and are the
second leading cause of death in the general population. In 2008
malignancies were responsible for over 120,000 deaths.
Estimates of CNESP - ISS of standardized rates of mortality, incidence and
prevalence of tumors, contained in the Document Ministerial address for
the fight against cancer in the period 2011-2013, show that significant
differences persist among the different Regions.
Most of the tumors tend to present a chronic, for which the following
relation holds: Prevalence = Incidence x Duration of the disease.
The median survival of cancer patients in Italy is of 6.12 years after
diagnosis in men and 8.56 years in women, but there are considerable
regional variations, with a clear north-south gradient: survival in men is
higher in Veneto (7, 09 years old), Friuli Venezia Giulia (6.86) and
Lombardia (6.62) and lowest in Basilicata (4.58), Sicilia (4.59), Campania
(4.72), Puglia and Calabria (4, 96); in women is greater in Liguria (9.23),
Lombardia (9.08) and Toscana (8.99) and lowest in Calabria (6.25),
Sardegna (7.02), Basilicata and Sicilia (7,12). The life expectancy of cancer
patients in the southern regions is also reduced by a third compared to
the best-performing regions.
In all regions the average duration of the disease in women is consistently
higher than that in men, documenting a higher lethality of cancer more
accidents in males.
We need to overcome the spatial inhomogeneity, optimizing policies for
the prevention and treatment diagnostic, therapeutic, and rehabilitative
care.
55
achievable through the cooperation of everyone and that affects
everyone, including future generations, which plays, therefore, a
synchronic and diachronic scope and cannot be compressed within the
limits of a mere right to medical care, as it implies wider obligations of
prevention, including environmental, protection of places of living and
working and training and health education and also interacts with the
overall pattern of development of society.
Health is a necessary condition for equality of opportunity and differences
in health status between social classes should be a matter of careful
reflection on ethical and legal, being able to make even more accentuated
and other inequalities threaten social welfare. The right to health is an
interest in the service of all other legitimate interests and the recognition
of its ethical value is a prerequisite for reconciliation and mutual support
of the fundamental rights of the individual with the interests of the
community.
“OFF LABEL” MEDICAL TREATMENTS IN
NEURO-COGNITIVE DISORDERS: COMPETENCY OF THE
PATIENT AND VALIDITY OF INFORMED CONSENT
1
1
1
Felice Carabellese , Antonio Leo , Donatella La Tegola ,
Federica Veneziani1, Chiara Candelli1, Caterina Bonfiglio2,
Giancarlo Logroscino1, Roberto Catanesi1
1
University of Bari, Italy
2
IRCCS De Bellis, Italy
[email protected], [email protected]
Due to an increase in life expectancy, neuro-cognitive disorders (i.e.
dementia) are heightening their incidence. In neuro-cognitive disorders,
psychotic symptoms and behavioural dysfunctions are common and
atypical antipsychotic drugs are considered, at moment, preferred
treatments. However in Italy their use in older adults with behavioural
abnormalities is off-label. The off-label medical treatments are regulated
by Law N° 94/98 and authorizes their prescription only after the
obtainment of patient’s written informed consent. Informed consent is an
essential prerequisite for any treatment in order to give to the patient a
fair degree of conscious adherence to medical treatment (Cassation
Court, Civ., Section III, n. 19220/20.08.2013). The protection of
constitutionally guaranteed personal rights should be a health care’s
primary goal, especially in the case of elderly patients, because of their
fragility and relational isolation. The adoption of specific legal protection’s
forms complying with the regulations in force, together with an adequate
information seem to be a useful way to safeguard the person’s
fundamental rights, as pursued by the bioethics.
For this reason we have designed formats for adult person and
Parents/Guardian ad litem/Custodian/Administrative Support for
interdicted, incapacitated or beneficiary. In our forms, scientific evidences
of efficacy and safety of proposed off-label treatment reported in the
literature are explained. This work fills an important gap in bioethical in
the implementation of bioethical principles in the clinical setting.
HEALTH PROTECTION BETWEEN ETHICS AND LAW
THE CLINICAL RISK MANAGEMENT AND THE MEDICAL
AND LEGAL SIDES IN THE IMPLEMENTATION OF THE
TELEMEDICINE ON MORE THAN ONE MEDICAL FACILITY IN
THE TRANSFUSION MEDICINE SERVICE OF THE ROME B
LOCAL HEALTH UNIT
Michele Capasso1, Dario Capasso1, Rosalba Caldarazzo2, Aldo Capasso3
1
AOU Federico II, Italy
2
AORN Santobono Pausilipon, Italy
3
IRCCS San Martino – IST National Institute for Cancer Research, Italy
[email protected]
G. Carbone1,2, D. Funaro1, D. Piergiovanni2, G. Nucci2, R. Serafini1,
2
M. Gabbrielli
1
Rome B Local Health Unit, Italy
2
University of Siena, Italy
[email protected], [email protected]
The Italian Constitution considers the protection of health as a
fundamental right of the individual and collective interest, are expected
to be insured free medical care to the indigent and states that health
treatments are voluntary, except as specifically provided by law, which,
however, cannot violate the limits imposed by respect for the human
person.
It is a law of "fourth generation", not only opposable to the State and
payable by the State, but also the premise for all other rights, which is
combined with the obligations from the state of social solidarity and
recognition of the individual. It 'not just a right of citizens, but "universal"
Introduction: It is well known that the law by decree 183/2012 as regards
the health safety, which has become law on October 31 2012, decrees
that the judge, in accordance with Article 1176 of the Civil Code, in order
to prove the health worker’s guilt, takes into account that the guidelines
and the good practices, supported by the National and International
Scientific Community, have been respected (art.3.1).
This regulation, together with the introduction of new rules, has obliged,
also in the transfusion field, to draw up clear and shared guidelines aimed
at helping the health workers of the immunohematology and Transfusion
56
UNESCO Chair in Bioethics 9th World Conference
Medicine Service (SIMT) and of the health associations in order to manage
the clinical risk at best.
Discussion: Since August 2012 the immunohematology and Transfusion
Medicine Service of the Local Health Department of Rome B, using the
telemedicine, has reorganized its own activities following the managing of
the suburban health facilities, and in particular those of the Policlinico
Casilino Hospital, at distance.
This new organizational method, in addition to helping the reduction of
the delivery time and the managing costs in terms of human and
technological resources, has allowed to revise and reorganize the
managing activities including the workflows of the personnel.
In order to minimize the possible problems due to the fact that the
technical personnel has been followed by doctors at distance and so that
they work autonomously, clear and shared guidelines of the activities to
follow have been drawn up.
At the same time Training Courses have been organized and made which
have been attended also by the technical personnel of the medical lab of
the Policlinico Hospital.
Results: Since August 2012 up to now, trought the managing at distance,
using the telemedicine, over 500 blood components units (packed red
blood cells, platelets, and fresh frozen plasma) have been assigned.
Since February 2013 the Units have been assigned with the method called
"type and screen"; this method, reducing the time of assignation of the
Units, regarding the donors typed, allows a better managing of the stocks
of the packed red blood cells.
This new procedure, in addition to improving the quality of the
performances of the Immunotransfusional Service of the Rome B Local
Health Department from an economic point of view with a saving of
about 350.000 euros (200.000 euros for human resources and 150.000 for
medical instrumentation) has allowed an increase of the operational
standards and of "know how" of the technical personnel and the doctors,
widening the professional and operational know how of both.
Conclusions: The new method implementation has allowed not only to
save from a direct and indirect economical point of view but also to
renew all the procedures, removing the old ones; the new method has
been also useful to determine and remove "old" problems and to make
the technical personnel more responsible.
Working in that way the transfusion safety has been improved from a
management point of view of the clinical risk not only in terms of quality
but also in terms of involvement of all the personnel.
MATERNITY AND IMMIGRANT WOMEN
Elena Carovigno, Sergio Schettini, Azienda Ospedaliera Regionale S. Carlo,
Italy
[email protected]
When women are doing well, the whole world is better (Amartya Sen,
Nobel Prize for Economics)
Immigrant women in the countries of Europe are nowadays millions. Most
part of them are healthy and in the prime of reproductive life. In Italy,
about 10% of births regard immigrant women, whose contribution to
fertility is becoming increasingly relevant. At the same time, attention is
growing about reproductive health issues and related different forms of
maternity protection, implemented by the western welfare systems,
today considered a necessary challenge to civilization.
Who works in obstetrics and gynecology department of is fully aware that
the number of foreign patients hospitalized, has increased significantly in
recent years. This implies, from the practical point of view and care, new
and complex situations. Health professionals must deal with such
situations relying more on common sense rather than on fixed protocols.
One of the first problems encountered by women in relation to
pregnancy, childbirth and child care, is the deep sense of isolation:
uprooted from their entourage family and friendship, their cultural
references related to maternity are to give birth alone or in the presence
of a husband or a friend from the same country, in hospitals aseptic
between professionals who have difficulty understanding them.
Taking care of health care issues connected with migrations is an
inevitable phenomenon, being the world patterned by prolonged political
and economic crises and affected by asymmetrical distribution of wealth,
in order to deal with issues applying humanity and conscience, we should
promote a consciousness-oriented bioethics understanding of different
cultures, preparing medical staff to a culture of 'hospitality and solidarity
while in the observance of ethics and the law.
TREATMENT PROSPECTS IN SEX OFFENDERS WITH
PARAPHILIC DISORDERS: PHARMACOLOGICAL
ANDROGEN DEPRIVATION BETWEEN THE NEED FOR
SOCIAL DEFENSE AND THE RIGHT TO HEALTH
Roberta Carrossino, Gabriele Rocca, University of Genoa – San Martino
Hospital, Italy
The development of alternative treatment paths to imprisonment for sex
offenders with paraphilic disorders is a topic of great interest among
researchers in criminology. It has long sparked an intense debate,
especially regarding the prospects of a pharmacological treatment.
In light of the recent scientific achievements concerning the definition and
treatment of paraphilic disorders, the purpose of the present study is to
investigate the existence and the international scope of treatment
programs that are alternative to detention for sex offenders.
Our study will chiefly focus on the effectiveness of the hormone therapy
(the so-called "Androgen deprivation") in the prevention of criminal
recidivism.
From a methodological point of view, after the presentation of the
program in use in the State of New York (USA), we will analyze and discuss
the results of a selection of the scientific articles published in English since
year 1990. These were selected either through an internet search
(Medline, Scopus, Google Scholar, Embase And Psycinfo) based on the
keywords "sex offender", "paraphilia", "drug treatment" and "androgen
deprivation", or by a manual search of the references cited in the articles.
Many treatment programs are being used both in Europe and in US.
In general, these programs consist of a first evaluation stage on
individuals that are in probation, which classifies them according to an
increasing level of "risk"; this is followed by a treatment phase, which
involves the use of hormonal substances (testosterone antagonists and
GnRH agonists) and psychotropic drugs (SSRIs).
The data emerging from the literature suggests a certain degree of
effectiveness of the antiandrogens in particular of the GnRH agonists in
the prevention of the risk of criminal recidivism, even though the long
term viability of such therapies needs to be substantiated by further
research. The combination of a pharmacological treatment with
psychotherapy was found to be more effective than the monotherapy
alone, while a cure should in any case be continued for no less than 3 to 5
years.
Certainly, the role of anti-androgen therapy in the treatment of sex
offenders with paraphilic disorders carries important consequences of
bioethics nature. These are highlighted by taking into account the goal to
strike a balance between the need for social defense and the right to a
free choice of care.
REVISITING THE INFAMOUS PERNKOPF ANATOMY ATLAS:
HISTORICAL LESSONS FOR MEDICAL LAW AND MEDICAL
ETHICS
PA Carstens, GP Stevens, University of Pretoria, South Africa
[email protected], [email protected]
The Pernkopf Anatomy Atlas was compiled during the Nazi era in Austria
(1938 to 1945) by Eduard Pernkopf, professor of anatomy and director of
the Anatomy Institute at the University of Vienna. Initially, the Atlas has
been hailed as a classic “masterpiece of unsurpassed beauty”, with
reference to the anatomical illustrations, until it was discovered in the
1980’s and mid-1990’s that Pernkopf and his talented illustrators (all
ardent Nazis), used human material obtained from executed Nazi victims
of terror to illustrate the Atlas. In addition, it transpired that the
illustrators have signed some of the illustrations with offensive Nazi
insignia (the swastika and the “SS-bolts”). Amid international
condemnation and outrage, the debate has raged on whether the Atlas
should be rejected or continued to be used. This paper revisits the Atlas
with specific reference to transgressions of medical law and ethics, the
question as to the continued use of the Atlas, as well as the startling fact
of the complicity of the medical and legal professions in providing
legitimacy which the Nazi regime needed for the implementation of their
political ideology. Ultimately, this paper assesses the lessons to be
learned from this historical, but contaminated publication. It is argued
that the principle of moral complicity, the right to human dignity, and,
ultimately, civilisation all militate against the continuous use of the Atlas.
Abstracts of Oral Presentations
GENOMIC STUDIES AND ETHICAL ISSUES IN THE CHINA OF
THE THIRD MILLENNIUM
Daniela Caruso, Macerata University, Italy
Since China's involvement in the Human Genome Project and its
completion of the sequencing of the rice genome, the country is
establishing a prominent place in genetics and genomics. Nevertheless, a
significantly lower level of standards in Bio-Medical regulation, or a
weakness in enforcing the related legislation, has the potential to lure
researchers to conduct experiments in China that contradict bioethical
standards. Can the differences between China and 'the West' be used as
an excuse for the current situation? Will the impact of China's new role in
the world fuel the global cultural antagonisms and ideologies of cultural
ethical relativism?
IMMIGRATION BETWEEN HOSPITALITY & CRIMINAL LAW
Guido Casaroli, University of Ferrara, Italy
[email protected]
As it is well Known, immigration policies involve two different kind of
needs that are difficult to balance for a number of reasons: on one hand,
the need of public security and the related perception by resident
nationals; on the other hand the need of migrant people to enjoy the full
respect of their fundamental human rights.
This preservation will illustrate the complex and problematical
development of the legislation on immigration and the related case-law.
The aim is to evaluate the state of the art in the research of a balance
between the aforesaid needs, a difficult but essential goal in the subject
at stake.
POSITIVE ATTITUDE CHANGES IN BIOETHICS STUDENTS
BEFORE AND AFTER SURVEY APPLICATION
María Casas, Panamerican University, México
[email protected]
Introduction: The development of an ethical compromise in medicine
students involves a challenge. The Bioethics courses have been
established, but traditional classes had not been enough. We have been
working in improve in our students an interest in bioethics, so we have
been trying to generate diverse academic scenarios that promotes the
integration of ethical principles to practice and give to students significant
experiences.
Objective: Encourage among medicine students, through their
participation in a survey, reflection and interest regarding bioethics
dilemmas.
Method: A questionnaire was applied to35 students enrolled on the
bioethics course during their 8th semester about interest in bioethics
class topics. The students apply a survey about confidentiality in their
hospital to 155 doctors, residents and interns about confidentiality cases.
After analysis and reflection of results, the same first questionnaire about
interest in bioethics topics was applied again to the students. The
comparative results showed an important improve of interest (42%),
knowledge (62%), bioethics application in medicine (71%), pertinence of
survey as teaching strategy (74%).
Conclusion: The survey method, applied and analyzed by bioethics
students is an interesting strategy to improve their attention in bioethics
dilemmas, because introduce them to reality and repercussion of this kind
of decisions in patients management.
THE DAMAGE OF THERAPEUTIC FURY
Claudia Casella, Italy
The grounds on which there is a need for an accurate investigation on the
nature of the problems caused from the infliction between suffering and
unneeded pain is without a doubt, on a human level, that of the end of
life. In this last phase of existence it is difficult to deny that the suffering
and the psycho-physical discomfort that often characterizes that of the
terminally ill should be rightly otherwise considered.
57
Here in fact is a question on which it is worth thinking about. Is it right to
configure, in our system, a law on the compensation of the loss of fury,
persistence or excessive therapeutic treatment?
As evident, it is a case that from a long time has brought up many
discussions and debates for the difficulties we meet when referring to
types of indemnifiable problems, the quantity, and the subjects,
legitimate to act in law to achieve the relief of those principally affected,
and the need to untie the knot of what is intended for “extraordinary and
not proportional treatment” and what the remedy available to the will of
the patient’s justice of “proportion” of the treatment. The dilemma is
nourished by a problem other than new aspects, connected to the duties
attributed to the medical operator and the boundaries of the guarantee
of his position, even with reference to the consent of the patient. In
particular, it refers to the profile of responsibility of the doctor, which on
expressed demand of the patient there is surgical intervention in the
attempt to delay the moment of death, even though for the medical
science that treatment cannot with good reason benefit the patient.
THE “STAMINA” CASE: BIOETHICAL ISSUES
Filomena Casella, Marianna Longo, Pietro Ferrara, Raffaele Di Guida,
Raffaele Landi, Second University of Naples, Italy
[email protected]
Recently in Italy, the scientific community has been involved in the case
law and the politics in the activities of Stamina Foundation for the
"method", based on adult mesenchymal cells, which is used by this
Company in the treatment of many diseases.
The publicity in the media raised by the cases of some citizens, following
an order of the AIFA which forbade the use, who asked to be subjected in
any case to this procedure coming up to appeal to the judiciary, have
forced the hand of the policy that is was forced, by decree, to authorize
this treatment in 32 patients enshrining the application in the context of
compassionate care.
The decree was converted into Law 25 March 2013 No 24, which has
created a dangerous precedent of non-validated therapies from the
medical assembly, but rendered valid by political and judicial decisions
under the influence of public opinion to the search for safe treatments for
some diseases which are still incurable, renewing the emotional wave of
similar cases that are repeated over the decades.
CRUSHING AND COVERT MEDICATIONS IN NURSING
HOME: PREVALENCE AND IMPLICATIONS FOR PRACTICE
1
2
3
4
Anna Castaldo , Camilla Boeri , Giordano Andrea , Talia Melo ,
5
6
Renzo Bagarolo , Miriam Magri
1
Institute Don Orione, Milan; Milan Nursing Council (Collegio IPASVI), Italy
2
San Giacomo Hospital, Italy
3
Foundation IRCCS Neurological Institute C. Besta, Italy
4
San Raffaele Hospital, Italy
5
Foundation Don Gnocchi, Italy
6
Foundation IRCCS Istituto Nazionale Tumori; Milan Nursing Council, Italy
[email protected]
Objective: To assess the prevalence of altered (crushing and covert)
medications in residents of the nursing homes; and explore the adherence
to the administration indications provided by pharmaceutical companies.
Methods: Between January-February 2012 a prospective observational
study was carried out using the following methods: observation of the
drug administration, analysis of clinical documentation, and a brief
interview to nurses who administered medications at each unit of the
participating nursing homes. The sample consisted of 697 residents at
three nursing homes in Milan.
Results: Each patient took an average of 7.5 medications per day, whose 6
were per Os. Forty percent of the patients took oral crushed medications.
Of 2639 drug administrations, 785 were crushed and among these 43%
were administered not in adherence to the pharmaceutical indications.
Twenty percent of patients took the drugs hided in drinks and food. Main
referred cause for crushing and hiding was swallowing disorder. Patients
who were administered altered medications had more cognitive and
functional deficits, compared to those who received them intact
(p<0.001).
58
UNESCO Chair in Bioethics 9th World Conference
Conclusions: Several government, business and professional
multidimensional programs are needed, including monitoring of adverse
events, and, among these, those associated with drug administration.
PROFILES OF LEGAL SIGNIFICANCE OF ADVANCE
DIRECTIVES FOR MEDICAL TREATMENT:
EXPERIENCES TO COMPARISON
THE NURSES ATTITUDES TOWARDS THE USE OF PHYSICAL
RESTRAINT: A FOCUS GROUP STUDY
Roberta Catalano, Second University of Naples, Italy
[email protected]
1
1
2
2
Anna Castaldo , Miriam Magri , Ermellina Zanetti , Carla Noci ,
3
1
1
1
Monica Gazzola , Paola Gobbi , Giorgio Carniel , Elisa Crotti ,
Giovanni Muttillo1, Stefano Bazzana2
1
Milan Nursing Council, Italy
2
Brescia Nursing Council, Italy
3
Aosta Nursing Council, Italy
[email protected]; [email protected]
Objectives: This research derives from a first multicentric research that
investigated the prevalence of physical restraint in hospitals and nursing
homes. The aim of study was to identify nurses’ motivations, attitudes,
values and feelings with reference to use of physical restraint, and factors
favoring it.
Method: This qualitative study was conducted through focus groups. The
sample, enrolled on a voluntary basis, consisted of 60 nurses, 40 ward
sisters and 30 nursing directors working in nursing homes and hospitals in
Italian provinces of Aosta, Brescia, Milan, Lodi and Monza and Brianza,
and who had already been investigated in the first research. The
interviews of 16 focus groups were recorded and transcribed verbatim,
with the consent of the participants. Content analysis of the data was
validated by the moderators together with the observers.
Results: Nurses experience a variety of emotions, often ambivalent and
conflicting, when they apply physical restraint to a patient: anger,
compassion, frustration. With regard to the attitudes and beliefs, the
groups discussed following issues: definition of physical restraint in terms
of restriction or safety (for patient, family, other patients and staff), and
frequency and duration of restraint: from extraordinary intervention (as
indicated in Nurses Code of Ethics) to mainly ordinary intervention.
Conclusions: The study highlighted the conflict experienced by nurses,
especially when restraint was used as a routine practice. Despite the
presence of discouraging factors, this research shown the need and
intention expressed by nurses to implement every evidence based
intervention strategy that can reduce use of physical restraint.
The paper builds on the analysis of the profiles of the legal significance of
advance directives for medical treatment in Italy, and aims to highlight
the convergences and divergences between the Italian experience and
that of some other countries, not only in Europe (Spain, UK, Belgium,
Holland, Switzerland, Israel), which governed in a more or less organic and
complete the phenomenon of advance directives. The privileged
perspective of the comparison between different experiences allows you
to identify issues and difficulties that have been faced in all systems
considered, and, for this way, it allows to carry out a study to select and /
or develop possible proposals for solutions for these issues and
difficulties.
The broad list of subjects about which it is expected the discussion is as
follows:
1. Advance directives for medical treatment: problems and prospects in
the Italian experience. 2. Principles and solutions in Europe. - 2. The
experience of some European countries: the document de “voluntades
anticipadas” in Spain. -3. (continued) The living will in the UK. 4.
(continued) Statements assets and choices of euthanasia in Belgium,
Holland and Switzerland. - 5. The original approach adopted in the State
of Israel. - 6. Issues arising from the comparison between the experiences
examined and possible solutions.
UNIVERSALITY OF HUMAN RIGHTS AND CULTURAL
DIVERSITY: SOME THOUGHTS FROM THE PERSPECTIVE OF
MIGRATIONS
Giuseppe Cataldi, University of Naples L'Orientale, Italy
The Report deals with the question of the balance between respect of
Fundamental Human Rights and assertion of diversity and plurality of
cultural values. The problem appears nowadays as a
tremendous priority, for the State domestic legal orders' closure due to
the measures adopted in consequence of international terrorisms. How to
turn a security problem in a matter of rights and mutual enrichment?
BIOETHIC(S): BRIDGE TO THE FUTURE (OF SPORT)
Franco Bruno Castaldo, University of Naples Parthenope, Italy
[email protected]
Faced with the rapid progress of biotechnology and biomedical
knowledge, the discoveries in the field of genetic engineering and the
increasing ability to manipulate human life and the ecosystem, Potter
believed that the only way to ensure the survival of humanity was
building "a new discipline that combines biological knowledge (bio) with
knowledge of the system of human values (ethics) 'a discipline that acted
as a' bridge 'between scientific knowledge and humanistic knowledge in
order to use with ‘wisdom 'new knowledge so as to improve the quality of
life of future generations.
Currently the word Sport is the one that makes us understand the term
globalization; in the last London Olympics there were 204 participating
nations. The Assembly of the United Nations is actually made up of 193
member states.
Always the last Olympics marked the previous record of world: Viewers in
billions London 2012: 4.80. The communicative and evocative power of
the sports is unimaginable, or rather, is known all too well: there are
many positive aspects tied to the sport; are increasing more and more
negative ones.
We need a bridge that brings together the value of the sciences related to
the bios (all sciences, including economics), with the knowledge of the
system of human values (ethics) in the kaleidoscopic world of sports,
there is indeed a necessity, that in the training and governance of the
sport, as well as the presence of the CEO (Chief Executive Officer) there is
also the presence of a CEO (Chief Ethics Officer).
THE LIFE-PROLONGING MEASURES (AGGRESSIVE
TREATMENT) IN LEGISLATION OF FOREIGN COUNTRIES
Francesco Catapano, Italy
There is a correlation of the topic “aggressive treatment” with other
themes related to "end of life" and in particular with the living will.
In USA, after the cases "Quinlan" (1976) and “Cruzan” (1988) it has stated
the general principle of "best interest of the patient" that is the best
solution in the interest of the patient.
It is originated the term “Medical futility” that indicates a clinical
intervention without any utilities to achieve a specific objective for a
particular patient.
In May 2012, the Senate of Argentina has approved the "worthy death
law" (Ley de muerte digna), which recognizes the right to refuse
therapeutic procedures totally disproportionate in relation to the
possibility of improvement, or that produce excessive suffering.
Even in Uruguay on March 18, 2009 was approved by Parliament the law
on aggressive treatment.
European Council has taken a position on issues relating to the rights of
the patient and dying with the resolution No. 613 of January 29, 1976 and
recommendation No. 779 of January 29, 1976, and with the
recommendation No. 1418 of 1999.
In 1993 the Supreme Court of the United Kingdom (Divisional Court), in
the case “Bland”, believed that doctors do not have the obligation to
administer unnecessary treatments, according to a scientific evaluation of
the condition of the patient's life, and that do not respond to his best
interests.
The Medical Capacity Act “has established a legal framework for those
unable to make decisions autonomously and for early declarations of will
(for the case of a contingency of inability”).
Abstracts of Oral Presentations
In Spain under the law No.41 which came into force in May 2003, the health
service must be appropriate to the circumstances and proportionate to the
needs of the patient; You must act in favour of the same and must be
respected his dignity.
In Germany the living will, into force on 1 September 2009, provide that the
doctor in charge should indicate which medical interventions are
appropriated to the conditions and the prognosis of the patient. The doctor
and the administrator discuss these measures, bearing in mind the
willingness of the patient as the foundation of the decision.
In France there is a law of April 22, 2005, known as "the law Leonetti", that
takes the name from the parliamentary (doctor), author of the legislative
initiative.
Certain rules are limitations and/or prohibitions to doctors to prevent the
life-prolonging measures (aggressive treatment); other rules regulate the
patient's right to manifest his will that put obstacle to the practice or the
danger of life-prolonging itself.
BIOETHICS AND SOCIAL SECURITY MEDICINE RESOURCES:
THE ANTINOMY BETWEEN ETHICS AND ECONOMY,
MEDICAL LEGAL EVALUATION AND REGULATORY
HARMONIZATION
Andrea Cavalli, Italy
[email protected]
The relationship between ethics and economics cannot be separated from
the historical analysis carried out by Smith and Marx and the subsequent
synthesis carried out by Weber, who has reassembled the unit between
ethics and economics abolishing the reciprocal hierarchies. In this view,
the ethical norms are a historical product that influence economic forces,
which in turn modify the ethical standards, according to a circular process
in development, but not exclusive: the ethical norms are influenced by
conflicts of interest and similarly the economic development (or the lack
of development) is hindered or favored by ethical values.
On the basis of these doctrinal paradigms, a special role is played by the
art. 38 of the Italian Constitution, which sets out a framework within
which ethical values and solidarity of social security must be harmonized
with the economic conditions necessary to achieve them.
Without prejudice to the aforesaid constitutional protection, a basic
question that now arises in the welfare sector is the need to predict the
effects on the economic process induced by instances innovative,
different or just more broad and diffuse. Equal importance is covered by
the identification of the most appropriate tools for their implementation,
in a globalized world in which new subjects appear realizing or requiring
ethical and economic behavior, such as enterprises, unions, supranational
and international organizations.
BIOETHICS AND HUMAN RIGHT’S PROTECTION:
THE ROLE OF FORENSIC EVIDENCE
Rossana Cecchi, Simona Napoletano, Alessandro Mariani,
Miriam Catanese, Cristina Sestili, Italy
[email protected]
There are 200 million people in the word living outside the country where
they were born, of these, nearly 10 million are refugees and asylum
seekers, the Amnesty International Report 2012 reveals that torture is
practiced in almost 101 countries. The prevention of torture and the
treatment of its victim are issues that involves an increasing number of
physician in western countries.
After the II War and the failure of domestic government in individual
right’s protection, International Community began to draw up a series of
norms started with the Universal Declaration of Human Rights as a moral
standard of achievement, followed by the adoption of Treaties declaring
that human being exists as subject of international law. In this historical
and political context, physicians can become active voices promoting
human rights principles, as members of the larger medical community
and trough the involvement in International Organization, such OHCHR
and its special procedures.
This paper proposes an analysis of the ethical issues involving medical
profession in its relationship whit the victim of torture, among the
different legal and international fields. The Authors examine the ethical
dilemmas that distinguish forensic practice whereas the physician’s role
become more investigative, as well as therapeutic, since he has to judge
59
whenever the patient’s story is legitimate. Forensic documentation can be
considered a very important tool to use in litigation of torture, for battling
impunity, for the redress of survivors, for rehabilitation, and it is
fundamental in documenting specific techniques and in educating people
about this phenomenon.
THE DECISION-MAKING PROCESS WITH REGARD TO THE
VIDEO-ASSISTED THORACIC SURGERY IN EIGHTY YEARS
OLD HESITANT INDIVIDUALS
C. Cecere, F. Policino, M. Cicalese, University “Federico II” Naples, Italy
Objectives: The elderly patients may have diminished awareness about
the risks, the complications and the benefits with regard to surgical
interventions. In these patients the decreased ability to understand the
passages of a clear, complete informed consent is not the equivalent to
the mental incompetence. Usually these are eight years old inattentive,
hesitant, tired and disheartened individuals. In these cases the
participation of members of the family and of acquaintancy that enjoy
patients confidence may be very useful to the patient for a better
understanding of the points of informed consent before the acceptance
or the refusal of the operation. The aims of this study were to evaluate
the role and the usefulness of this participation in these cases.
Methods: In a series of 28 of eight years old patients (male, 16; female,
12; age range, 81-89 years) with recurrent pleural effusions 17 were
hesitant to take a decision about VATS (Video Assisted Thoracic Surgery)
after medical meeting with the surgeon and the anesthetist. The
participation of persons that enjoyed hesitant patient’s confidence was
requested in order to help the single patient to remove his doubts and
hesitations, to understand the risks and the advantages of the proposed
operation clearly and to facilitate the decision-making process at last.
Results: The participation of persons that enjoyed hesitant patient’s
confidence played a leading role in the understanding of medical concepts
and in the decision-making process: 15 (88%) accepted the operation
whereas 2 (12%) refused the VATS.
Conclusions: The role of persons that enjoy patient’s confidence is crucial in
the decision-making process with regard to surgical interventions in eight
years old hesitant individuals. Their participations safeguard the patient’s
autonomy and facilitate the informed consent process for the medical staff.
DO THE PATIENTS PARTICIPATING IN CLINICAL TRIALS
UNDERSTAND INFORMATION ABOUT CLINICAL TRIALS?
Asta Cekanauskaite, Vilnius University, Lithuania
[email protected]
The paper aims to analyse the problem of informed consent in clinical
drug trials. Understanding of the provided information is one of the basic
components of a person’s sound and informed decision to participate in a
clinical trial. Our research evaluated informedness about clinical trials of
patients participating in clinical drug trials in Lithuania, with emphasis on
the informedness about key elements of clinical trial design (placebocontrol, double-blindness, and randomisation). An anonymous survey of
patients participating in clinical drug trials was conducted for the
purposes of this study.
The results of the study reveal that the legal framework sets the basis for
adequate informedness about clinical trials of clinical trial participants,
however, patients participating in placebo-controlled clinical trials are
insufficiently informed about clinical trials. Patients participating in
placebo-controlled clinical trials are better informed about the rights of
clinical trial participants than about clinical trial design, however,
informedness about design is a more important condition for overall
informedness. The majority of placebo-controlled clinical trial participants
do not understand at least one of the three key elements of clinical trials
design and they tend to interpret the scientific methods used in clinical
trials therapeutically.
METAETHICS AND BIOETHICS: “PSYCHOPATH CASE”
Nenad Cekić, University of Belgrade, Serbia
[email protected]; [email protected]
The externalism/internalism debate about the very nature of moral
motivation is one of the most intense disputes in contemporary meta-
60
UNESCO Chair in Bioethics 9th World Conference
ethics, but not only in meta-ethics. It has internal connection with
bioethics, psychology, medicine, etc. A famous philosophical definition of
bioethics is: “As a species of practical ethics, bioethics exhibits a complex
and contested relationship to philosophical theory. On one hand, many
who teach and write in this interdisciplinary field are philosophers who
naturally believe that their specific contribution to the field—their
‘expertise’ if you will—consists in the application of distinctly
philosophical methods, including various kinds of ethical theory, to
practical problems arising in biomedical research, clinical medicine, and
public health. The particularly intriguing fact is that “bioethics” nowadays
is usually qualified as “a branch of ethics”, but not as a “branch of
philosophy”. The widespread discussion about the nature of moral
motivation (internalism/externalism dichotomy) obviously is a part of
“bioethics”, but meta-ethics, as well. This debate is directly concerned
with biology, medicine and various kinds of empirical investigations. I
would like to explore the following three problems
It is quite obvious that multidisciplinarity is a fact in these areas of
inquiries. However, there are two reasons for further analyses. First,
should we have to obey some boundaries between some disciplines –
biology is obviously a branch of medicine, medicine is not, all those
disciplines are not philosophy. The author’s thesis is that
multidisciplinarity is valuable. However, some clear boundaries between
scientific and other disciplines have to be observed because that
observation is a guarantee of fruitful multidisciplinary discussion.
Secondly, the author offers little illustration that could show that, in some
cases, those boundaries between disciplines are not quite visible. The
problem of psychopath motivation is a fairly clear example. Is it
psychopath motivation - moral motivation, impaired motivation or not a
motivation at all?
THE HUMAN EMBRYO
David Černý, Charles University in Prague, Institute of State and Law of the
Czech Academy of Sciences, Czech Republic
[email protected]
One of the most discussed problems in contemporary bioethics concerns
the moral status of the human embryo. Briefly, we can distinguish two
main approaches to the philosophical evaluation of the moral status of
the human embryo: the first approach is functional, the second approach
is ontological. According to the first approach, the human embryo can be
defined in functional terms in respect to some preferred function it can
manifest (sentience, immediately exercisable capacity of thought,
consciousness etc.). Supporters of the second approach to the definition
of the human embryo understand it as a member of the same ontological
kind adult human beings are falling under. In my contributions I argue for
the second philosophical position: I am trying to show that the human
embryo is a fully-fledged member of the human kind, that it is indeed a
person (defined ontologically) and that animalism is true meaning that
our personal identity and persistence do not include any psychological
facts.
AN OPINION OF ETHICS COMMITTEE “CARLO ROMANO”
ON CONTINUATION OF TREATMENT IN AN
ANENCEPHALIC NEWBORN
I. Cerrone, D. Faillace, L. Terracciano, V. Graziano, M. Paternoster,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
This paper illustrates a case where the Ethics Committee “Carlo Romano”
issued an opinion on the continuation of resuscitation in an anencephalic
new-born of 18 days, intubated since birth for artificial ventilation.
Whether to start and to continue treatment of newborns with severe
medical conditions is a largely debated issue in paediatrics.
Although technology breakthroughs offer new tools to tackle congenital
abnormalities and pre-term deliveries, the decision as to whether starting
and whether continuing care is very difficult in every single case.
In the case above, in the exclusive interest of the baby and regardless of
any perspective organ donation, although possible it might be, the EC
deemed it was worth continuing clinical care with ordinary therapies only,
since any resort to extraordinary means would configure futile care
(expressly forbidden by the Italian Code of Medical Ethics) in
consideration the negative prognosis of the baby.
The EC also recommended proper doctor-parent communication in order
to p inform the family about the baby’s clinical conditions and receive
informed consent to the therapeutic strategy proposed, highlighting that
doctors are entitled to refuse any request for treatment that is in contrast
with their consolidated scientific principles and ethical beliefs, although
taking on the responsibility for all diagnostic-therapeutic act performed.
CONSCIENTIOUS OBJECTION, LAW AND BIOETHICS:
THE RIGHT TO DISOBEY LAW BASED ON MORAL,
RELIGIOUS OR PHILOSOPHICAL CONVICTIONS AND ITS
INTERFACE WITH BIOETHICS
Selma Aparecida Cesarin, Universidade Cruzeiro do Sul;
Centro Universitário São Camilo, Brazil
[email protected], [email protected]
Conscientious objection arose in the Middle Ages, based on religious
aspects and it has migrated to other areas, including Medical area. The
conscientious objector refuses to fulfill what is not in accordance with his
principles, as a matter of moral, philosophical or political convictions.
There is a large discussion about the physicians’ right of conscientious
objection. In Brazil, the current Code of Medical Ethics (2009) establishes
the physician right to refuse to perform acts which, although legal, are
contrary to his conscience. However, Ministry of Health technical rules
does not recognize the conscientious objection right if there is risk of
death, if there is no other physician or if medical omission can cause harm
to the patient. Thus, it is clear that autonomy is not unlimited. If there is
no other doctor, one will have to answer on behalf his professional
prerogatives and non-maleficence and beneficence of the patient. Law
commandments are coercive. Among them, conscientious objection is an
exception because it justifies and authorizes law disobedience, without
facing penalties. Conscientious objection is provided differently in each
state: one in the Constitution, in ordinary laws in others, and only in court
decisions in other ones. Respect personal convictions without harming
others, refusing to obey the laws, as a matter of moral, philosophical or
political convictions assume sense of justice and defense of the right and
they are moral capacities of ethical people. Thus, the connection of
conscientious objection, Law and Bioethics presents a rich field of study
and discussion.
HUMAN HONOR SOLUTION PROCESS FOR THE
EUTHANASIA AND WILLPOWER CONCEPT AND THE
DISPUTES RESULTING FROM THE DIFFERENCES BETWEEN
NATIONAL LAWS AND INTERNATIONAL LAWS IN TERMS
OF HEALTH LAW AND BASIC HUMAN RIGHTS
Neşe Çetin, Izmir University and Ege University (student), Turkey
[email protected]
While the treatment protocols prolong human life, it also created people
who are confined to bed, who survive with the help of various treatment
devices and other people, who are isolated in pain, and who feel
degraded.
There are international differences about euthanasia and willpower, will
representing right, different practices between the international law and
national law cause a chaotic situation among the patients and their
families.
Knowing that currently there are 400 thousand Alzheimer’s patients in
Turkey and that there will be 14 million Alzheimer’s patients in the USA in
2050, will the treatment and caring expenses of people without insurance
and nobody to take care of them be covered?
Religious and political authority and Positive law imprison life beyond the
willpower of human. Ignoring the existence of disbelievers may be
considered as the violation of minority rights. The right of the patient to
refuse treatment should be evaluated as a part of euthanasia. Just as
there are people refusing blood transfusion as a result of his/her religious
believes in cases where blood transfusion is compulsory; and just as there
are studies to include halal-forbidden definitions of medicines in their
leaflets. The person is the only owner of the right having the willpower to
choose whether to bear or not to bear the pain and suffering he/she will
Abstracts of Oral Presentations
experience to live longer. Not the politicians, healthcare personnel,
religious authorities, or their families.
When ethical committees accept the right of euthanasia, the euthanasia
tourism would be prevented.
This would eliminate patient hierarchy being applied in practice, whether
consciously or unconsciously, and the lack of attention due to personnel
and technical incapacities for the people who chose to live. The criteria
regarding brain death is changing in time. The fact that patients diagnosed
with brain death may be treated in the future because retrospective
studies cannot be done and also the legal problems in organ transfers
should be considered.
While the person has the right with his/her free will in any situation that
may be harmful for his/her body in the consents sought for the experiments
in health improvements, he/she does not have the right regarding his/her
own body in case of suffering, and he/she is forced by the laws to live; and
this makes it mandatory to rearrange the laws. Accepting the willpower of
person within basic rights would eliminate the legal gap.
MIGRATING MODERNITY’S
Iain Chambers, University of Naples, “Orientale”, Italy
Speaker intends to talk of the refashioning of modern society, cultures
and identity in the light of the planetary migrations that have historically
constituted the hubris of the modern world. The principal scope of these
considerations is to render explicit the idea of migration as central to the
historical and cultural processes that continually renovate our being
positioned in planetary perspectives and possibilities. This, in turn,
transforms the question of migration from a marginalised socio-economic
problem into a profound critical challenge, leading to the adoption of
what we might consider to be the multiplicities of a migrating modernity
that is not only ‘ours’ to define and manage.
NOTHING IS WHAT IT SEEMS – PRENATAL DIAGNOSIS IN
POLAND
Weronika Chanska, Jagiellonian University Medical College, Italy
[email protected]
According to the Polish legal regulations prenatal diagnosis is offered to
women belonging to the established risk groups and provided on a basis
of general health insurance. However, the number of prenatal tests
carried out is much lower than in other European countries. Moreover,
despite of being included into state-funded health care procedures, the
access to prenatal tests is still highly restricted in some parts of Poland.
The small number of genetic centers and their uneven geographical
distribution are partly responsible for the situation. But there are other
social factors limiting the access to prenatal diagnosis. For instance, it is
still pretty common practice to base the decision whether a woman
should have prenatal examination on a private (usually religious based)
opinion held by her doctor.
Polish medical experts express conflicting opinions on prenatal diagnosis.
At one extreme are these demanding full access to all prenatal tests, at
another – those who express strong reservation about them and point out
that women “should be better informed about the risk of miscarriage in
result of prenatal examination”. The most extreme proposals call for
complete withdrawal of prenatal tests.
The aim of the presentation is to analyze how prenatal diagnosis was
introduced and then put into practice in a specific cultural and socioeconomic context of Poland. The presentation will focus on explaining the
discrepancy between legal regulations concerning prenatal diagnosis and
the way it is practiced in Poland. The opinions of Polish women will be
quoted as well as the tactics they use to navigate complex health and
social care system. Finally, a comment will be made on how market forces
change the access and practice of prenatal diagnosis.
THE ANALYSIS OF THE PRODUCTIZATION OF ORGAN
TRANSPORTATION IN THE ANGLES OF ETHICS AND LAWS
Yunliang Chen, Central South University, China
[email protected]
The imbalance between supply and demand of organ transplantation in
China has seriously restricted the development of organ transplant
61
technology. If the organ transportation was accepted into product range,
it will surely help to expand the donor source, and also protect the quality
of organs transplanted. Because of advances in medical technology and
the changes of ethical believes, the organ transplantation is becoming
increasingly popular. We should replace the theory of “Absolutely
Negate” with the one of “Certainly Limit”, in order to establish a unitive
organ trading markets. What’s more, we also need to make
corresponding laws or regulations, so that to regulate the access and
trade of organs.
NEW CODE OF MEDICAL DEONTOLOGY IN ITALY
Roberta Chersevani, OMCeO Gorizia President; FNOMCeO Deontological
Committee, Italy
[email protected]
The new code of medical ethics represents the hard work of very
motivated colleagues and experts, that have evaluated the latest code
published in 2006, maintaining the main, unchanged ethical principles,
and adding or updating statements according to the changes that are
happening in medicine.
The Code is not a state law, but a standard of conduct to guide the
behaviour of the physician, listing specific duties and obligations.
It must be coherent with evolving modernity of medicine, that comprises
the environment, social economical issues, inter professional relations,
end of life ethics, balance between therapy and futility, life-long learning,
quality and appropriateness, the important role of risk management and
continuous advancing technological issues.
WOMEN AND CHILDREN FIRST: AN ETHICAL CHALLENGE
FOR THE DEVELOPING WORLD
Frank A. Chervenak, Laurence McCullough, NYPH-Weill Cornell Medical
College, USA
[email protected]
“Women and Children First” is a familiar phrase and comes down to us
from the heroic sacrifice of their lives by British soldiers on HMS
Birkenhead in 1852. “Women and Children First,” the New York
Declaration of the International Academy of Perinatal Medicine, has
defined biases in the allocation of healthcare resources for women and
children in the developing world. In this presentation we identify
challenges to the just allocation of resources for fetal, neonatal, and
pregnant patients and provide ethically appropriate responses to these
challenges. We distinguish substantive justice from procedural justice and
identify biases against perinatal patients related to both substantive and
procedural justice. We then identify ethically justified responses to these
biases that perinatalogists should adopt in reforming organizational and
public policy by responsibly advocating for fetal, neonatal, and pregnant
patients, whose healthcare otherwise is at risk of unacceptable
compromise.
PLANNED HOME BIRTH: AN ETHICAL CHALLENGE FOR THE
DEVELOPED WORLD
Frank A. Chervenak, Laurence B. McCullough, Amos Grunebaum,
NYPH-Weill Cornell Medical College, USA
[email protected]
This presentation addresses the recrudescence of and new support for
planned home birth in the developed world. We emphasize that patient
safety and show that planned home birth has unnecessary, preventable,
irremediable increased risk of harm for pregnant, fetal, and neonatal
patients. We document that the persistently high rates of emergency
transport undermines patient safety and satisfaction, the raison d’etre of
planned home birth, and that a comprehensive analysis undermines
claims about the cost-effectiveness of planned home birth. We then argue
that obstetricians and other concerned physicians should understand,
identify, and correct the root causes of the recrudescence of planned
home birth; respond to expressions of interest in planned home birth by
women with evidence-based recommendations against it; refuse to
participate in planned home birth; but still provide excellent and
compassionate emergency obstetric care to women transported from
planned home birth. We explain why obstetricians should not participate
62
UNESCO Chair in Bioethics 9th World Conference
in or refer to randomized clinical trials of planned home vs. planned
hospital birth. We call on obstetricians, other concerned physicians,
midwives and other obstetric providers, and their professional
associations not to support planned home birth when there are safe and
compassionate hospital-based alternatives and to advocate for a safe
home-birth-like experience in the hospital.
CORD BLOOD BANKING PUBLIC OR PRIVATE?
Antonio Chiàntera, University of Naples, Italy
[email protected]
Altruistic donation vs personal use of umbilical cord blood: an ethical
dilemma.
Stem cells from umbilical cord blood are used for allogenic hematopoietic
transplantation in young and adult patients. Altruistic donation of
umbilical cord blood has been widely sponsored in several countries by
Scientific Societies and National Authorities. During the last decades more
than 500000 umbilical cord blood units have been donated for unrelated
use.
In some countries, however, private banks offer the opportunity of
storing umbilical cord blood for personal (family) use only.
The opportunity of altruistic vs personal use umbilical cord banking is
cause of controversial opinions from a clinical and ethical point of view.
Most of clinical experiences of hematopoietic transplantation have been
conducted using unrelated donors, but in the recent year the number of
transplantation using cells from related donors has been increasing with
favorable results. Further, the clinical relevance of related umbilical cord
blood banking for personal use may change, if umbilical cord blood will be
useful for tissue repair in degenerative diseases (such as diabetes and
Parkinson's disease).
From an ethical point of view, it has been suggested that there is little
social justification for private umbilical cord blood banking, as it provides
no benefit to the community and little benefit to parents, due to the low
likelihood of requiring umbilical cord blood later in life. However,
psychological reassurance and safeguard of the future should be
considered among the reasons for personal use banking.
Logistic aspects are also to be considered. In some areas public banks do
not offer logistic support, thus reducing the opportunity of choice for the
couple.
While the scientific knowledge improves, information to the parents is the
most important ethical aspect. Several studies have suggested that most
of couples have only limited information on umbilical cord blood storing.
FROM CONSENT TO CHOICE: THE ETHICAL IMPLICATIONS
OF ‘EMPOWERMENT-CENTRED HEALTHCARE’
Luca Chiapperino, PhD student, University of Milan, Italy
[email protected]
The ethics of public health is currently facing the challenge of reevaluating patient autonomy in the light of the political, social and
scientific constraints characterising our societies. Among these,
prevention, early detection, and the necessity to reduce healthcare costs
for national budgets, play an increasing role within medicine. This state of
affairs has led to the development of a whole range of strategies within
different contexts, which aim at reforming healthcare. Such initiatives put
a strong emphasis on individual responsibility for both the improvement
of services offered by the system, as well as the wellbeing of the
population. I label such strategies ‘empowerment-centred reforms’.
The aim of my work is to analyse controversies arising from this paradigmshift. In particular, I build upon a critique to empowerment (Juengst et al.
2012) claiming that this approach is a mixture of paternalism and
authority putting the individual in a weak position. Siding with this
conclusion, I argue that empowerment-centred healthcare is hardly
defensible without a critical evaluation of its normative implications. In
order to ground this claim, I analyse the ethical flaws attributed to
different forms of paternalism (Dworkin 2010), and map the
empowerment approach depicted by Juengst et al. onto this taxonomy.
By doing so, I specify what kind of requirements a morally defensible
notion of empowerment should meet, in order not to be a problematic
instance of paternalism. Finally, I conclude by sketching an axiology of
empowerment aiming at rendering this approach an ethically defensible
guidance for public health.
IMMIGRATION POLICIES FOR THE SCHOOLS
Luciano Chiappetta, MIUR (Italian Ministry of University and Research),
Italy
Italy has chosen full integration of migrants in the school and intercultural
education as a cross-cutting, as background supplement that is common
to all disciplines and all teachers. Intercultural education rejects the logic
of assimilation, both the establishment and strengthening of ethnic
communities closed. It needs to fostering and promote the diversity of
nationalities in the composition of classes, rather than forming classes
according to cultural or religious backgrounds. We could say that these
characteristics define a possible Italian integration, an original path even
in comparison with other European countries.
GLOBAL BIOETHICS: HISTORICAL AND PRESENT
PERSPECTIVES
B. Chiarelli, University of Florence, Italy
[email protected]
Adaptive success and evolution are determined by how we interact with
the natural environment and all other forms of life (bios). Yet in our
pursuit to dominate the natural world, Man has lost sight of this basic
premise, and continues to exploit natural resources, to contaminate, to
consume more than necessary, and to misuse his reproductive capacities.
For this reason Global Bioethics emerged in the 80s, a culmination of
mental resistance on the part of many observers, who sought to
readdress the balance between Man and Nature – a balance which must
be reinstated if we are to survive. Corrective measures are required,
which should be free from the influence of purely religious or political
influence, since their ideologies are frequently founded on strategies of
power, with little regard for the general well-being of all living species.
Global Bioethics, as opposed to Bioethics, was formulated by myself, Van
Rensselaer Potter, Antonio Moroni, Laura Westra and others, to
transcend the restraints of science, uniting it with the humanities to
create a new expanded consciousness, an alliance between life and the
environment in which all factors: environmental, biological, physical,
psychological, social and economic, recognize that they are
interdependent.
ETHICAL PROBLEMS OF SUSCEPTIBILITY TESTING
M. Chiarelli, I. Aquila, S. Boca, D. De Bartolo, S. Gratteri, C. Pileggi, C. Ricci,
A. Serra, P. Ricci, University “Magna Graecia” of Catanzaro, Italy
[email protected]
Introduction: The progress in human genome research are opening the
door to a new paradigm for medical practice promising to transform
healthcare. Personalized medicine (PM) was founded with the purpose of
highlight the link between molecular and clinical profiles of an individual.
Therefore, the susceptibility and risk of disease could be quantified and
planned when persons are still healthy. However, even though less than
500 genetic markers of disease have recently been identified and
validated, it is important to note that the activation of these changes is
conditioned by the expression of proteins, the physiological variability and
exogenous factors.
Objective: The objective of this study is to evaluate the current state of
personalized medicine on a genetic basis, with particular reference to the
ethical implications.
Materials and Methods: A review of the national and international
literature was done. The literature search was done using the PubMed
NCBI.
Results: Actually there are many pressing ethical problems in the field of
personalized medicine. Firstly, measures of adequately implementing
informed consent for biomarker studies is discussed as well as issues of
confidentiality, data protection and individuals’ right to know / do not
know. Secondly, the predictive tests results can influence individual
wellbeing negatively or cause the discrimination of persons with
predispositions to certain diseases. Finally, the measures of PM can lead
to significant cost increases and, therefore, involve an additional financial
burden for healthcare systems. Consequently the problems of equal
access to healthcare services could further exacerbate.
Conclusions: Researchers and practitioners who are involved in the
development of PM can give valuable information (ex art. 33 of the Italian
Abstracts of Oral Presentations
Code of Medical Ethics) about the current state of development of the PM
and in ethical discourse on PM. Until now, the concepts of
“individualized” or “personalized medicine” have been inadequately
transmitted by the media that are producing considerable confusion in
physicians and citizens.
THE RIGHT TO SELF-DETERMINATION OF TERMINALLY ILL
PATIENTS THROUGH THE INTERPRETATION OF
CONSTITUTIONAL PRINCIPLES
Lorenzo Chieffi, Centro Interuniversitario di Ricerca Bioetica di Napoli
(C.I.R.B.); Second University of Naples, Italy
[email protected]
The analysis which concerns “end of life decisions”, allows the individual
to dispose of his body freely. The through the "planning ahead" of its
existence, in the presence of a persistent vegetative state, does not
exclude the use of interpretive techniques apt to verify the effective aim
of constitutional provisions which often tend to attribute opposite
meanings (freedom versus dutifulness) upon this topic.
In opposition to those who declare their willingness in drawing from the
constitutional foundation about the theory on the unavailability or the
inability of human life, others seem to incline towards different directions.
They believe they may get the reasons for the recognition of a wide
autonomy and self-determination, leading to an effect of dangerous
radicalization of the positions, that in some European countries (starting
from Italy) has so far been prevented, so to achieve a balanced regulation
of the terminal stages.
Many are the reasons by which patients have freedom over their own
body in consideration of the fact that human dignity has its prevailing
value.
Taking into view the historical reasons that led the founding fathers (in
Italy, France, Germany) to consecrate the self-determination of the
person, reduced by the Nazi medicine as a guinea pigs, today other
considerations, related to the presence of life-sustaining technologies,
have to be added.
Especially in the field of fundamental rights, including the goods are to be
counted from the personalistic involved therapeutic relationship, this
progress of exegesis, in favor of an affirmation of the freedom of
treatment, are also the result of strong pressure up / bottom from the
transnational law (ECHR, Oviedo Convention, the Charter of Nice,
Declarations UNESCO), developed by supranational bodies, also of legal
origin. The development of a movement of legal models, the outcome of
such interpretative stimuli, is therefore able to determine the progressive
expansion of the exegetical aim of the fundamental principles and,
consequently, our living Constitution.
THE ASSESSMENT OF MEDICAL PROFESSIONALISM
AMONG NEW PARAMEDICAL STAFF UNDER
POST-GRADUATE TRAINING PROGRAM
1
2
Chiung-hsuan Chiu , Chung-jen Wei
1
Taipei Medical University, Taiwan
2
Fu Jen Catholic University, Taiwan
[email protected], [email protected]
Introduction: Post-graduate training program to paramedical staffs was
introduced in the year of 2006 in Taiwan, and became one of the few PGY
program to paramedical staff reimbursed by government in the world.
This PGY program is set to accredit the infrastructure and faculty
development in order to assure the teaching quality for the new
paramedical staff, and ultimately enhance staff’s core competency and
medical professionalism within two-year curriculum. Therefore, this study
aims to appraise the medical professionalism of new paramedical staff
under the training program.
Method: This cross-sectional study utilizes self-report questionnaire to
125 new paramedical staffs under PGY training program from March to
May, 2012. Questionnaire is developed based on the code of conduct
defined by Professional Associations, and we also checked with its
validation and reliability. Five constructs include medical knowledge and
clinical skill, attitude to patients, teamwork, duty to public health, and
protection of patient rights. Likert’s 9-point scale ranges from 1 (lest
valued) to 9 (most valued).
63
Result: The result shows the better performance of PGY2than one of
PGY1 in overall evaluation of medical professionalism. Constructs such as
“attitude to patients, “teamwork”, and “protection of patient rights” are
the improved ones after one-year training. Also, respondents report drop
on dimension of “duty of public health” compared PGY2 nurses to PGY1
ones.
Conclusion: Competency is a key stone to guarantee good quality of
patient care. PGY program play an important role to help new
paramedical staffs successfully meet the requirement of Professional
Association and expectation of society. Anyhow, more focus should be
placed to enhance the awareness of “duty of public health”.
ISLAM AND PALLIATIVE CARE
Kartina A. Choong, Lancashire Law School, University of Central
Lancashire, UK
[email protected]
Palliative care is experiencing an upsurge in interest and importance. This
is driven, paradoxically, by modern medicine’s increased ability to provide
effective pain relief on the one hand and an acknowledgement of its
limitation in delivering cure for certain diseases on the other. With many
Muslims suffering from such incurable diseases worldwide, they too are
now faced with the decision of whether to avail themselves of pain relief
offered within the framework of scientific medicine. But while the general
ethos of palliative care which is to promote the well-being of those facing
life-threatening illnesses is consistent with Islamic values, this paper
explores whether the same can be submitted for modern methods of pain
control. The investigation will be steered by three overriding questions.
First, if pain could, as highlighted in the Quran, lead to the expiation of
sins and that forbearance would be rewarded in the hereafter, how far
can Muslims seek pain relief and who should make the decision of what
pain threshold must be reached before this can be pursued? Secondly, if
dying is deemed as a time for reflection and reaffirmation of faith, can
Muslims receive pain control medications that compromise
consciousness? Thirdly, if Islam enjoins patients to persist with the search
for cure since “God has not sent a disease without sending a cure for it”
(Sahih Al-Bukhari), does resorting to palliative care signify that one has
prematurely given up hope? Through an exploration of these questions,
the paper aims to investigate how these perceived tensions between
Islamic principles and the modern regime of palliative care can be
resolved.
THE EUROPEAN PARTNERSHIP
Barbara Ciampella, Accoglienza & Integrazione, Italy
[email protected]
The YOSALT Project afforded Ealing Council the opportunity to partner
with Accoglienza e Integrazione (A&I – a social cooperative based in
Milan) and Federazione Logopedisti Italiani (FLI – Italy’s national
association for Speech and Language Therapists) to conduct the first study
of SLCN prevalence in Italy. This partnership promoted the high value of
mutual learning across borders in a neglected area of social research and
displays a successful example of transnational cooperation to improve
social outcomes. A&I works from many years in actions for social inclusion
and young offenders are one of the targets of its services.
PROPOSAL FOR THE REALIZATION OF AN EUROPEAN CIVIL
PROTECTION MODULE FOR THE FORENSIC PATHOLOGY
AND DISASTER VICTIM IDENTIFICATION
F. Ciciliano1,2, L. Moscatello1,2, P. Di Lorenzo1, M. Paternoster 1
1
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
2
Presidency of the Council of Ministers - Civil Protection Department Emergency Management Office, Italy
The Community Mechanism for civil protection was established by the
Council Decision of 23 October 2001 and its main role is to facilitate cooperation in civil protection assistance interventions in the event of major
emergencies which may require urgent response actions. This applies also
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UNESCO Chair in Bioethics 9th World Conference
to situations where there may be an imminent threat of such major
emergencies.
Civil protection assistance often consists of highly specialised equipment
and teams for tasks such as search and rescue, medical emergency care,
water sanitation. The civil protection response thus makes a vital
contribution in the immediate post-disaster phase.
A number of such specialised emergency response units have been set up
under the Community mechanism for civil protection to respond more
quickly to emergencies.
At the moment, there are 17 models of modules; these operational units
are prepared by one or more countries. They can be used for
interventions both within and outside the EU. They have to be available at
short notice and be able to work independently.
Aim of this work is the proposal of a new type of civil protection module,
related to the forensic pathology and, in particular, to disaster victim
identification (DVI).
DVI-Team is a multidisciplinary team, working in the context of major
emergencies, that provides a rapid response in order to the personal
identification of people who have died during the catastrophes or
disasters or other events of civil protection. The team must be able to
take action as soon as possible to prevent the post-mortem cadaveric
transformations that inevitably arise after the death and that advance
gradually due to the passing of time.
The key issues are represented by timely interventions, also in relation to
local authorities and the technical possibility to work through
international standard levels, trying to reach the prospect to provide right
answers in a short time, the technical possibility to make the necessary
sampling on the bodies, the real and sure conservation of biological
samples and quick contacts to send them at authorized laboratories for
the genetic identification (DNA tests).
The aim of this work is carry out an accurate analysis of risks, process the
competence to react to local adverse events, manage the crisis according
to emergency plans and manage an operational forensic pathology plan
on the involved territory.
The realization of shared intervention protocols, included the
psychological support to staff and to victims’ relatives, will be useful to
facilitate the operational procedures with other institutions responsible
for rescue operations. This coordination plan allows to avoid the
hampering in relief operations and tending to the preservation of the
status of place, that represents a fundamental aspect for the intervention
of forensic pathologists.
BIOETHICAL ASPECTS IN THE HEALTH CARE OF REFUGEES
DURING THE 2011-2012 IMMIGRATION EMERGENCY IN
SOUTHERN MEDITERRANEAN
1,2
1,2
1
1
F. Ciciliano , L. Moscatello , A. Tuccillo , M. Paternoster
1
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
2
Presidency of the Italian Council of Ministers - Civil Protection
Department - Emergency Management Office, Italy
The analysis of the causes of migration confirms that the push factors in
the emigration countries (armed conflicts, dictatorships, human rights
violations, environmental degradation and natural disasters, economic
underdevelopment, population growth, unemployment, spreading of
Western lifestyle, etc.) and pull factors of the destination countries
(economic opportunity, study and training, manpower request, family
reunion for asylum seekers, etc.) facilitate more and more the
immigration phenomena in Europe, especially towards Italy, that
represents the best gateway for the populations coming from Northern
Africa.
The revolutionary wave of demonstrations and protests rising in some
Arab countries (Tunisia, Libya, Egypt, etc.) called “Arab Spring” has been
the main factor, in the years 2011 and 2012, of the exodus of people
coming in Italy from the African countries touching the Mediterranean sea
but also from the sub-Saharan countries (mainly Somalia, Nigeria, Niger,
Burkina Faso, Ghana, Côte d’Ivoire).
For the Italian law, the right to health is a universal and inalienable human
right that must be guaranteed to everyone: citizens, legal immigrants,
illegal immigrants. In Italy, urgent and non-delayable medical care,
protection of pregnancy and maternity, health care in behalf of underage,
international prophylaxis, vaccination, prophylaxis, diagnosis and
treatment of all infectious diseases are rights recognized to everyone, also
to illegal immigrants.
Almost all immigrants coming in Italy have a normal physical and mental
health, also due to their young average age. This phenomenon, called
"healthy migrant” effect, is owing to self-selection of those who decide to
emigrate. A lot of risk factors can threatening the health status: housing
degradation, poor sanitation, lack of income, underemployment,
unprotected and unsafe working conditions, dangerous jobs, depression
and lack of family support, differences in eating habits and climate
conditions, psychological distress due to adjustment problems and
uprooting from their origins, discrimination in access to health services.
One of the most important needs is represented by the preservation of
the health of immigrants, firstly in order to eliminate the risk factors and,
subsequently, to give the best chance of care in case of illness.
The principle of informed consent and the bioethical principle of
autonomy are fundamental milestones in the Western legal systems,
included the Italian one: these rights are exercised by freely and
voluntarily consenting or refusing consent to recommended medical
procedures, based on a sufficient knowledge of the benefits, burdens, and
risks involved. The ability to give informed consent depends on adequate
disclosure of information, patient freedom of choice, patient
comprehension of information and patient capacity for decision-making.
By meeting these four requirements, three necessary conditions are
satisfied: that the individual’s decision is voluntary, that this decision is
made with an appropriate understanding of the circumstances and that
the patient’s choice is deliberate insofar as the patient has carefully
considered all of the expected benefits, burdens, risks and reasonable
alternatives.
The use of health services, also induced by high-risk behaviours, is caused
not only on the basis of a simple individual choice but many other factors
deeply influence the migrants
Discriminatory experience, language difficulties, current differences in
interpreting concepts of health and disease, unawareness and
disinformation about the local health system and health care institutions
represent negative external factors that produce under-utilization or
inadequate use of health services by the migrants.
The purpose of this work is to illustrate the procedures developed by the
Italian Civil Protection Department for the health care and protection of
migrants coming from Northern Africa in the years 2011 and 2012.
HUMANITARIAN AID AND MEDICAL EMERGENCY
RESPONSE RELIEF IN INTERNATIONAL DISASTERS:
RECOVERY OF MEDICAL PATERNALISM VS. DIFFUSION OF
PATIENT AUTONOMY
1,2
1
1,2
1
F. Ciciliano , M. Paternoster , L. Moscatello , C. Buccelli
1
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
2
Presidency of the Italian Council of Ministers - Civil Protection
Department - Emergency Management Office, Italy
Healthcare personnel in humanitarian organizations is often committed to
ensuring healthcare and the distribution of medical aid within
international interventions in areas of the world affected by crises
because of wars, draught, famine, epidemics and cataclysms.
Healthcare interventions are generally organized according to a system of
fixed healthcare facilities and mobile healthcare clinics.
Healthcare actions are guided by international standards of care and the
fundamental ethical rules of behaviour, amongst which those mentioned
in the UNESCO Universal Declaration on Bioethics and Human Rights.
In particular it is provided that patients receive a standard of care similar
to that ensured in the country of origin of the medical staff and that any
preventive, diagnostic and therapeutic intervention be performed only
upon free and adequately informed consent by the person concerned.
Humanitarian missions nevertheless are a test bench for the procedure of
information and the obtaining of consent to the medical act, due to the
possible following reasons:
a) prejudice of local populations against medical technicalities (in favour
of alternative medicines);
b) cultural subordination to the figure of the doctor;
c) marked information gap between patients and doctors due to cultural
and language differences;
d) distrust of information forms;
Abstracts of Oral Presentations
65
e) too many patients to treat in a short time (little time to devote to
information);
f) local cultural, social and legal differences with respect to the
ownership of the patient of the right to consent.
g) Medical care to orphans and abandoned children of different ages
h) Gender-related difficulties.
International ethical documents dealing with such issues (amongst which,
for sake of completeness and constant updating, we may mention the one
developed by the Nuffield Council on Bioethics) propose a series of
measures, which may be difficult to apply or which lend themselves to
misunderstanding (e.g. that is the case of the “genuine” consent).
Totally convinced as we are that adequately informed consent (as far as
possible and perhaps with the help of cultural mediators) is an
indispensable act of medical profession, we reached the conclusion that
in certain conditions there is a dangerous resort to medical paternalism
due to the tacit ineffective consent of the needy patient who feels the
need to accept the medical care offered by the humanitarian contingent
(also independently of information) In other conditions it is the same
humanitarian contingent which virtuously introduces and underlines the
principle of the respect of human rights and dignity in contexts where
patients were still subordinate or subject to the choices of doctors.
From that point of view healthcare personnel engaged in humanitarian
missions are vehicles for the dissemination of bioethical culture in
developing or otherwise vulnerable populations, and are agents of a
beneficial globalization of the principle of autonomy.
products such as benzene through inhalation is one of the systems most
commonly affected. Signs and systems include headaches, dizziness,
dyspnoea, reduced haematological indices such as haemoglobin
concentration, and reduced lung function parameters. Although
benzene’s presence in various aspects of our daily life activities in the
home, work place, on the road and the general environment puts the
general population at risk of its hazards, those by virtue of their
profession at more regular exposure to it are at more risk to benzene
toxicity. This makes it very important for a regular periodic assessment of
the level of exposure to benzene and its metabolites in these workers
imperative. As best as the authors know such assessment has yet to be
carried out in the Kaduna refinery since its nearly two decades existence.
This present study aims to look into the harmful effects on respiratory
functions, and to evaluate the adequacy/inadequacy of safety measures
such as protective clothing at the refinery and petroleum pump workers
in relation to current bioethical standards/guidelines in Nigeria. A
questionnaire would be administered to appropriately selected samples
of both refinery and petroleum pump workers to collect relevant
information on exposure. Lung functions will be assessed by vitalograph
and the peak flow meter. Inferences from analysis of data collected would
be used to advice the relevant authorities for appropriate legislature and
policies for appropriate precautionary steps for a safer working
environment for the instant workers.
Acknowledgements: Kaduna State University, Kaduna, Nigeria, for
funding.
THE DONATION OF A PERSON'S BODY AFTER DEATH:
A QUESTION OF ETHICS AND SCIENCE
PRESENTATION “THE YOSALT PROJECT”
Rosagemma Ciliberti, Susanna Penco, Linda Alfano,
1
Alessandro Bonsignore , Francesco De Stefano
1
University of Genova, Italy
[email protected]
There is widespread agreement in the international scientific literature
that practice on a human cadaver and anatomical examination are both
essential for the development of surgical skills and biomedical research.
Human biomaterial in fact is an important resource in studying illnesses,
developing new therapeutic approaches as well as offering alternatives to
animal experimentation.
In Italy, unlike other European countries (Austria, Belgium, France,
Germany, the Netherlands, Spain, etc.), the possibility of using bodies
post mortem for study and research is hindered considerably by a scarcity
of donations.
Undoubtedly, the thought of one's body being dissected raises various
forms of psychological resistance: the body of the deceased becomes an
object (Körper), but will nevertheless be the body of a person (Leib), one
of whose options is to donate the body after death.
Current legislation in Italy (based on a Royal Decree going back to 1933)
does not address the issues raised by the donation of a body, which
include for instance: how the donor gives his/her consent; the binding
nature of the donor's wishes; the prevalence, if any, of a private law
concept of donorship rather than a public law one; the importance and
role of the wishes of the relatives and loved ones of the donor; the
standards of efficiency to be guaranteed by donee organisations
regarding the handling of bodies, their recomposition and return to family
members; the identification of appropriate regional research centres, etc.
The authors wish to draw attention to a proposed protocol for the
donation of a person's body after death, the use of the body, and the
steps required to ensure the utmost respect of bereavement.
BIOETHICAL IMPLICATIONS OF THE EFFECT OF BENZENE
EXPOSURE IN RESPIRATORY FUNCTIONS OF KADUNA
REFINERY PLANT WORKERS AND PETROLEUM PUMP
WORKERS IN KADUNA STATE, NIGERIA
F.L. Ciroma, M.S. Yusuf, A.H. Dikko, Y.Y. Dangata, Kaduna State University,
Nigeria
[email protected], [email protected]
Benzene, a main component of petroleum, is a well-documented
environmental toxin. It poses a variety of health problems to almost every
system of the body. Those on a regular and long term exposure are more
at risk. The respiratory system, for being in direct contact with petroleum
Raffaella Citro, Federazione Logopedisti Italiani, Italy
[email protected]
The “Youth Offending and Speech and Language Therapy” project was a
research project funded by the European Commission under its
Programme for Employment and Social Solidarity PROGRESS (20072013).Through the YOSALT project, Ealing Council carried out the first
known comparative study to investigate whether speech and language
therapy can have a positive impact on the lives of young people who have
offended. It was sought firstly, to add to the evidence base of the
prevalence of Speech Language Communication Needs amongst young
people who have offended; secondly, to measure the benefit of speech
and language therapy to these young people; and thirdly, to develop a
model and tools for other jurisdictions and organisations across the UK
and Europe to use and learn from.
COLLECTIVE CONSEQUENCES OF A VERY LONG LIFE:
THE RIGHT TO LIFE EXTENSION COULD / SHOULD BE
CONSIDERED A HUMAN RIGHT
Didier Coeurnelle, Healthy Life Extension Society, France
[email protected]
A longer and healthier life is enjoyed by the citizens who can benefit from
it.
This evolution is also positive for the whole society. It is better for the
economy, for a sustainable environment, for a peaceful society, for the
level of well-being in the society.
This speech gives a description of positive political, economic and
sociological aspects of a world with a largely delayed senescence.
The following aspects concerning life extension will be approached
accompanied with statistical information:
• Economic consequences: lower health costs and questions related to
pensions.
• Environmental consequences: the question of overpopulation and the
pattern of consumption of people advancing in age.
• Harmonious society: ethical questions, lower rate of crime, higher rate
of happiness and a higher level of resilience.
The question of the moral necessity of health research funding will be
discussed. Should the State subsidize life extension? Taking in
consideration, medical progresses and the possibilities to accelerate
them, we can consider the right to health as defined in national laws,
national constitutions and international treaties under a new light. We
could consider scientific research for a longer life as a moral obligation or
a duty to rescue.
66
UNESCO Chair in Bioethics 9th World Conference
IS THERE AN ETHICAL DIMENSION TO CONTEMPORARY
HEALTH CARE REFORM IN THE UNITED STATES OF
AMERICA?
1
2
3
John P Conomy , Jill Mushkat , Massimiliano Nigro
1
Health Systems Design Corporation and Case Western Reserve
University, USA
2
Cleveland Clinic Foundation, USA
3
Italy
[email protected]
The answer to this tautology is resoundingly “yes.” That affirmation
requires a clear infusion of ethics and human rights into the formation of
current planning and operational implementation in the revolution within
American health care epitomized by “Obama Care,” now the law of the
land. Health care is an individual matter, yet for the individual as well as
the nation, freedom, democracy, the stability of government and its
institutions, national security and prosperity rest upon the physical and
mental health of people. To date, health care reform in the USA has
focused upon costs and access to health services. Currently the USA
spends more of its GDP on health than the aggregate GDP of most
countries on earth (nearly 18% of GDP, or about $3 trillion USD).
Conomy et al, Health Care Unesco
Health care outcomes are not commensurate. About 15% of people in the
USA lack effective access to health care. These inequalities and current
legislated solutions have led to public unrest calling into question the
tense, dynamic relationship between people, their government and their
health. This ethics-laden triangulation is not well explored within the USA.
Analysis of this ethical tension and derivative solutions consists of
national and individual balancing of the roles of paternalism and
individuality; between utilitarianism and private, human rights; and for
the USA, creating a workable, ethical balance among competing systems
of health resource distribution, namely capitalism and socialism. The USA
has the resources to do this: they consist of governmental and quasigovernmental entities; the examples of other nations; and the
commitment of the country’s eleeomosynary, educational and research
institutions. The remaining question for the USA and the world, given the
global, historic role of the USA in health, is whether or not the USA can
build the political will to carry what has begun with Obama Care to a
successful, stable, just and nationally acceptable solution.
END OF LIFE CARE AND RISK OF OVERTREATMENTS:
AN INTRODUCTION
Franco Contaldo, Federico II University Medical School, Italy
Nowadays End of Life Treatments (ELTs) can sustain life despite severe
and multiple organ dysfunction. ELTs may require advanced technologies
which may be expensive or low cost, complex or easy to manage, even at
home of the patient. Because of the nature of ELTs difficult decisions
often need to be made by the clinician about their usefulness not only in
terms of survival but also in terms of quality of life; not the least, a
rational use of financial resources should harmonize with humanitarian
principles to guarantee dignity of life at its end. Finally because at the end
of life many patients lose their psychological autonomy, becoming totally
or partially unconscious, the family / care givers are directly involved in
ELT decision process. Cultural, regional, social, national health economic
policies, family and previous individual disposal on ELT may influence and
contribute to the final decision.
Good communication between the physician and the family appears
essential and should clearly emphasize prognosis and quality of life. In
case, actually the most frequent circumstance, patient s are followed by
an interdisciplinary team all staff members need to be involved in the
final medical proposal to be discussed with family and/or care givers.
Although the largest number of medical and scientific societies, including
national and international artificial nutrition societies, state that they is
no ethical nor medical decision difference between withholding or
withdrawing life sustaining treatments, some controversy – in particular
due to religious determinants – may be expected. However there is
common agreement that in case of withdrawing life sustaining treatments
all procedures to limit any possible discomfort should be utilized.
In conclusion ELTs require a continuous effort to reach a global consensus,
at least as far as reasonable medical protocols to be properly discussed
with the patient (if possible), family and care givers. Collaboration of the
interdisciplinary care team, eventually well trained to communicate with
the patient and his/her family, appears a substantial aspect to prevent
overtreatments and guarantee patient’s dignity at the end of life.
CLINICAL ETHICS COMMITTEES IN SPAIN
Josep Corbella i Duch, Hospital de la Santa Creu i Sant Pau, Spain
[email protected]
Ethics committees within the Spanish Healthcare System have different
functions within their different settings. Since the early 1990s all centres
that conduct clinical trials with drugs must have a clinical research ethics
committee (CREC). Their role is mainly to approve and oversee clinical
drug trials, aiming to protect participants’ rights, safety and well-being in
accordance with the Declaration of Helsinki. All CRECs are independent
committees made up of researchers and research promoters. They must
include physicians, pharmacists, clinical pharmacologists and nurses, as
well as non-healthcare professionals, one of whom is always a medical
lawyer. Since 2007, biobanks and centres that carry out biomedical
research of any kind must have a research ethics committee (REC) and
again they must be multidisciplinary and independent. RECS are governed
by legal regulations to safeguard individuals’ rights. At a voluntary level,
centres may set up Healthcare Ethics Committees (HEC). HECs have an
advisory, consultant role and promote bioethical training. Their structure
is not uniform in Spain. At a national level there is the Spanish Bioethics
Committee, which also has an advisory role. The co-existence of CRECS
and RECs is confusing. There is a need to clarify their legislation and
determine their function.
EXTRAORDINARY LIFE-SAVING MEASURES IN ICU
Antonio Corcione, University Federico II, Italy
[email protected]
Initiatives to improve end-of-life care in intensive care units face several
important barriers. These include inflated expectations for critical care
therapies, which are shared by many clinicians and many patients and
families; preoccupation with an unattainable level of prognostic certainty,
delaying attention to palliative needs; and fragmentation of the
healthcare team into separate “silos” of disciplines and specialties. It’s
often really difficult to go through these barriers with relevant empirical
evidence. Specific strategies to improve intensive care unit palliative care,
including consultation by palliative care specialists, and palliative care
quality measurement are needed to be discussed.
THE INTERNATIONAL CODE OF ETHICS FOR
OCCUPATIONAL HEALTH PROFESSIONALS: A GUIDE FOR
THE PHYSICIANS WHO WORK FOR ITALIAN WORKERS’
COMPENSATION AUTHORITY
Carla Corsi, Maurizio Carnassale, INAIL, Italy
[email protected]; [email protected]
The aim of occupational medicine is to protect workers’ health and to
promote the adaptation of work to the capabilities of workers taking into
account their state of health. The expression occupational health
professionals includes all those who provide occupational health services
within the framework of a multidisciplinary team approach. Doctors,
employers, social partners and workers have to deal with objectives
which may be competing such as the protection of employment and the
protection of health. At the same time all the occupational health
professionals have to find strategies for recovery and reintegration into
the working environment for workers after an injuries at work or in case
of occupational and work-related diseases. INAIL: Italian workers
compensation authority is now not just compensation but a global
protection system for all workers. Recent innovative provisions of law
ranging from prevention, medical treatment, rehabilitation and
reintegration in the social and working life put INAIL’s physicians in a key
role in the management of occupational health practice. The principles of
ethics and the values on which is based the International Code of Ethics
for Occupational Health Professional are the same for INAIL’s physician in
their daily work. Our aim at INAIL is to improve the health and the social
well-being of workers individually and collectively with integrity in
professional conduct, with impartiality, with respect for the protection of
Abstracts of Oral Presentations
confidentiality of health data. We have to face with accident at work and
professional diseases carrying out our tasks according to good practice
and professional ethics. In this article the authors want to analyze the
duties and obligations of INAIL’s physicians in the execution of their
functions in accordance with the rules laid down by the Code of Ethics.
TECHNICAL DEVICES AND INTERVENTIONS TO SUPPORT
THE LIFE OF THE RELATIONSHIP: THE BIO-PSYCHO-SOCIAL
APPROACH TO THE PERSON WITH DISABILITIES TO WORK
Giovanni Cortese, Superintendence General Medical – Sector “Curative
Health Benefits, and Rehabilitation and Prosthetic” – INAIL, Italy
[email protected]
According to the ISO 9999/2011 standard, an assistive product refers to
any device, tool, equipment, or technical system used by a disable person,
that is specifically produced or generally available in the business
markets, to prevent, compensate, alleviate or neutralize an impairment,
disability or handicap.
The ICF (International Classification of Functioning, Disability and Health)
of WHO, describes the functioning and disability, as products of the
interaction between the person with the environment.
From ICF emerges the importance of the environmental factors that
highlight the negative side of the functioning that is translated as a
disability.
Assistive devices that are environmental tools play a decisive role in
improving the performance of the person in the interaction with their
surroundings. This is a crucial feature, which impact the quality of life.
Taking care of the injured worker according to the bio-psycho-social
model also includes measures to support reintegration into social life,
labor, sports and family, with the purpose to ensure the comprehensive
and integrated system of protection that the Institute intends to
guarantee to its own coverage.
The rehabilitation interventions to life are:
• Support interventions to the person
• Autonomy support interventions
• Interventions for the integration and re-socialization
• Measure to facilitate the return to work
• Interventions for the promotion of sport.
The bio-psychosocial approach has been designed to give the person with
disabilities the ability to regain self-determination and a role in the family,
society and work.
THE ROLE OF THE FAMILY IN END-OF-LIFE CHOICES
Silvana Cortese, Italy
[email protected]
Contemporary times and end-of-life choices: The first part of the
relationship concerns the urgency and the present-day importance of
end-of-life choices.
Cases of individuals staying alive while affected by particularly severe
pathologies or even in a condition of “suspended death”
The second part introduces peculiar cases, trying to explain how Italian
Law manages such situations.
The key role of Family Law: This part analyzes the Italian Family Law,
emphasizing specific situations, as <common-law couple> or illegitimate
children.
The “Englaro” case and the reconstruction of the patient’s will. In Italy
very important and captivating was the so-called “Englaro case”: it
concerns a young woman, who, after a persistent 17 years vegetative
state, died after the interruption of the artificial feeding. Her father,
Beppino Englaro, as legal guardian, was able to organize a people’s
protest in order to have public acceptance of the patient’s will.
An overview of the situation at international level.
At the end you can find a general overview, concerning international
legislations.
67
THE ETHICS OF PREIMPLANTATIONAL DIAGNOSIS IN
“SAVIOR” EMBRYOS
Caue Cosme Dutra da Silva¹, Homero Januario Caramico², Rodrigo Fock³,
Iuri Cosme Dutra da Silva, Cléber Pinto Camacho
¹ Student, Universidade Nove de Julho (UNINOVE), Brazil
² Student, Centro Universitário São Camilo, Brazil
³ Universidade Federal de Medicina (UNIFESP), Brazil
[email protected]
The genetic preimplantational diagnosis is a screening of gens, prior to
implantation in the womb, consisting in the analysis of one or two cells
from the embryo to research possible diseases. This technique, of recent
clinical use, allows the diagnosis of more than a hundred genetic diseases
and represents a major breakthrough for medicine.
The technique of preimplantational diagnosis is indicated, especially for
patients who are at high risk of transmitting genetic or chromosomal
abnormalities to their children and has the goal of prevention of transfer
embryos with genetic alterations to the womb.
While revolutionizing, the use of this technique brings some concerns: it is
possible to select embryos genetically healthy, but this procedure also
allows the realization of many other choices, like physical characteristics
or sex of the baby, which are banned in Brazil, by specific legislation of the
country, which only allows the detection of genetic diseases.
Besides the problem of sexing, another relevant issue is the so-called
"savior embryos", ie. the birth of children with the aim to realize a future
bone marrow transplant or a donation of umbilical cord blood in an
attempt to cure a brother that has a disease. Such cases increase every
day and should be treated carefully, because it can generate a lot of
psychological problems in the child, who may feel "used", by believing he
or she was created just to save the sibling.
There are not only legal, but also ethical and moral limits concerning this
technique. The choice of gender and certain physical characteristics such
as eye color or hair, and the birth of children considered "saviors
embryos" can generate discrimination even before it is born.
Thus, this work has the scope of analyzing the ethical, moral and legal
limits involving genetic testing of preimplantational diagnosis.
THE PRESENT AND THE FUTURE OF MOLECULAR
DIAGNOSTIC TESTS: THERE ARE ETHICAL CONCERNS?
Caue Cosme Dutra da Silva¹, Homero Januario Caramico², Rodrigo Fock³,
Iuri Cosme Dutra da Silva, Cléber Pinto Camacho
¹ Student, Universidade Nove de Julho (UNINOVE), Brazil
² Student, Centro Universitário São Camilo, Brazil
³ Universidade Federal de Medicina (UNIFESP), Brazil
[email protected]
A Medicine where all human diseases genetic background can be studied
in a practical and fast way, choosing the best type of treatment and
effectively changing the natural course of a person's life, is no longer just
science fiction, as it was in a few years ago. Through new sequencing
technologies, the world is coming to a new era, more than any other time.
More than ever, there are concerns within moral and ethical aspects and
the need of predictions or guidelines.
Today is possible to genetic test for multiple congenital
anomalies, permitting detection of gains or losses of genomic segments
and a variety of techniques can be used to survey the entire genome for
copy number changes.
With the discovery of new technologies and, consequently, its increasing
in accessibility, the possibility to "scan" the genome of a human being
through the use of techniques such as "whole genome sequencing", also
called "next generation sequencing", and the use of DNA or RNA as
biomarkers, allows the achievement of the procedures in a much faster
and more effective way than ever, leading to a time where the potential
to revolutionize the understanding of human health and disease
physiology.
The precision of diagnostic testing is likely to continue to increase and the
cost to decrease Molecular genetic and genomic testing to guide
treatment of common conditions will increasingly be incorporated into
day-to-day medical practice
There is, however, the fear, when science develops much more than the
legislation. Once again, as in every great discovery, we face a "crossroad",
in which a minor misconduct can lead to a cold and inhuman society.
Important is the concern and attempts to forecast this subject, which, in a
68
UNESCO Chair in Bioethics 9th World Conference
short period of time, could cause tests without appropriate selection
criteria, just for the satisfaction of human curiosity, generating more harm
than good, due afflictions, encumbrance of the health system and
stigmatization. In the long run, we might even come across a "genocrat"
world in which our genes plays the major role in discriminating and
setting the future of our lives, much more than ourselves and our
meritocracy affect our lives, marriages, jobs and humanity.
WHISTLEBLOW WHILE YOU WORK:
IS IT ETHICALLY ACCEPTABLE FOR DOCTORS TO USE THE
MEDIA AS A MEANS FOR 'BLOWING THE WHISTLE'?
Chantal Cox-George, (student), University of Bristol, UK
[email protected]
Professional guidance demands that doctors raise any concerns that they
have for patients in their care. Whilst this is the case, recent revelations
about inadequate standards of care in publicly funded hospitals and other
healthcare services raise questions about the existence of adequate
communication systems in the United Kingdom’s National Health Service.
Currently, raising concerns outside of the organisation is not preferable
but can be legal under the Public Interest Disclosure Act. However, some
high profile cases show that when healthcare professionals have chosen
to raise concerns or ‘blow the whistle’ – particularly externally – they
have encountered significant repercussions.
I propose that doctors have a pro tanto moral duty (in addition to their
existing professional duty) to blow the whistle when they believe that
patient care or safety is being compromised. I argue that it is possible to
provide ethical justification for doctors who, having failed to initiate a
response by raising concerns within the organisation, choose to utilise
external sources such as the media. I argue that whistleblowing so
publicly promotes the interests of not only patients but the NHS too, and
so the doctor does not violate his duty of loyalty to either party by doing
so. By comparing whistleblowing using television programmes to national
newspapers, I accept that certain sources actually require doctors to
violate the overarching moral duty to ‘do no harm’. I conclude that
doctors act more reasonably and in a more ethically justifiable manner if
they raise concerns to sources such as national newspapers that do not
require morally controversial behaviour (e.g. undercover filming) in order
to achieve their purpose.
PERCUTANEOUS ENDOSCOPIC GASTROSTOMY (PEG):
COMMUNICATIONAL, CULTURAL AND ETHICS ASPECTS
Francesco Cupella, Italy
[email protected]
The PEG (Percutaneous Endoscopic Gastrostomy) is an alimentary probe
crossing the abdominal wall until the stomach and allows the nutrition in
absence of swallowing function or like supplement to the normal feeding.
Currently, the diffusion and extension of its execution in many
degenerative diseases involves some ethical issues. There is an absence of
certain evidence of procedure benefit especially in dementia,
amyotrophic lateral sclerosis, stroke dysphagia, permanent vegetative
state and terminal illness. Decision making should have a multidisciplinary
approach including care givers and including many ethical and legal
aspects.
PROFESSIONAL INTERPERSONAL RELATIONSHIPS
INVOLVING PHYSICIANS – CROATIAN PERSPECTIVE
Marko Ćurković1, Ana Borovečki2
1
University Psychiatric Hospital Vrapče, Croatia
2
University of Zagreb School of Medicine, Croatia
[email protected]
Physicians’ professional interpersonal relationships single out as a special
category of medical professionalism, namely medical ethics, and
represent a crucial element of physicians’ everyday practice having a
profound impact on all health care processes and the outcomes of those
processes. While physicians usually adhere to universal values of globally
defined norms of professionalism, they still can betray their
implementation in everyday practice. These lapses in professionalism can
have severe consequences, and according to scientific literature, they can
be forestalled across the continuum of becoming and being physician,
either by education or interventions. While this issue is perceived as
important in Croatian public and academic community, it is still
insufficiently explored. We will present our preliminary results that were
collected throughout two pilot studies, one from the eyes of the public
and one from physicians’ perspective, regarding professional
interpersonal relationships among physicians in Republic of Croatia. We
are also going to show the actual structure of medical education referring
to medical professionalism in our country and, by advising the latest
scientific literature, suggest possible new implementations.
HOSPITAL ETHICS COMMITTEES IN POLAND –
FIRST ATTEMPTS
Marek Czarkowski1,2, Katarzyna Dźwiarek1, Katarzyna Kaczmarczyk1
1
Warsaw Medical University, Poland
2
Center of Bioethics of the Supreme Medical Council, Poland
[email protected]
According to UNESCO guidelines, one of the four forms of the bioethics
committees in medicine are the Hospital Ethics Committees (HECs). The
concept of appointing HECs was frequently supported by the Polish
Chamber of Physicians & Dentists, the Polish Bioethics Society, as well as
the Polish Conference of the Chiefs of Medical Associations. In November
2008 a law was passed in regards to accreditation in public health. Under
this law, a statute of the Center of Monitoring Quality in Health System
(CMJ) was enacted. CMJ is accepted under WHO Collaborating Centre for
Development of Quality and Safety in Health Systems. In 2009, CMJ
published a set of Standards for Accreditation for Hospitals, in which it
was recommended, that every hospital: “select a group of trusted
individuals to which, like an Ethics committee, employees as well as
patients might refer to, with ethical dilemmas”. The purpose of this
project is to evaluate how the above guidelines are implemented in real
practice.
Among all hospitals which obtained CMJ accreditation (n=110), 38
account for the presence of HECs. The implementation of HECs was
evaluated with a survey sent to the hospitals. It was determined that
there is a wide range of names for HECs in Poland. On average, there are
6 members of HECs, of which 50% are doctors (individual HECs are
comprised of doctors only). The composition of HECs in other professions
is diverse and non-standardized (lawyers, nurses, physiotherapists,
economists, social lawyers, pharmacists, psychologists, medical
statisticians, patient representatives, clergy). Only about 25% of HECs
have rules, which in the absence of European Union or national legislation
is a threat for transparency and accountability of HECs. HECs tasks are
formulated in different ways, and also deviate from the accepted three
main objectives of HECs. HECs seldom give advice, and usually not more
than once a year. In conclusion: few Polish hospitals possess HECs, and
the composition, operation and workload are not always appropriate. To
ensure a reliable operation of HECs requires the development of relevant
legislation, standard operating procedures and well trained members.
THERAPEUTIC OBSTINACY: NOTES FOR AN ANALYSIS OF
END-OF-LIFE BIOETHICAL ISSUES
Emilia D’Antuono, University of Naples Federico II, Italy
Therapeutic obstinacy is currently a crucial topic in ethical, bioethical,
legal and, also, specifically “philosophical” research. Philosophy and the
medical sciences are inextricably interconnected. Since their beginnings in
Classical Greece, philosophical reasoning and medical knowledge are
linked to each other by a genealogical nexus, relevant to their capacity to
produce values and rules of behavior which constitute a therapeutic
praxis in which knowledge and ethics intertwine.
My paper aims at highlighting, in a properly ethical-philosophical
perspective, some end-of-life issues by investigating particularly the
bioethical implications of the transition from the “commitment” to
preserving life, which has always been binding in medical deontology, to
“therapeutic obstinacy”.
By the term “therapeutic obstinacy”, which was adopted in medical
terminology in the second half of the twentieth century, is meant the use
of various therapies and technological means aimed at merely preserving
the survival of a human being in critical conditions and without any hope
Abstracts of Oral Presentations
of improvement. However, the identification of “therapeutic obstinacy” is
all but unambiguous. There is indeed an urgent need for a fundamentally
shared definition of the opportunities, limitations and legitimacy of
medical interventions in light of the current availability of medical and
pharmaceutical technologies.
My paper aims at analyzing the following issues:
• The contentious aspects of such controversial practices as artificial
nutrition and hydration;
• The overcoming of the absolute and meta-historical dimension of the
medical ethos, which should take into account the patient’s
subjectivity and capacity of self-determination in concrete existential
situations.
THE TRUTH AND MEANING OF THE HUMAN EMBRYO’S
LIFE: FROM ANCIENT GREECE TO THE CONTEMPORARY
BIOETHICAL DEBATE
Emilia D’Antuono, University of Naples “Federico II”, Italy
[email protected]
Science describes the stages of embryogenesis and delineates the
embryo’s biological identity. This paper draws on scientific conclusions in
dealing with the representation of the human embryo in history and with
the interpretation of its reality and meaning in relation to some critical
aspects of western culture. The question of prenatal human life is long
lasting. There are different answers to this question, depending on
particular eras and on the motivations that have inspired the researches
of philosophers, scientists, jurists and, recently, bioethicists. A wider
historical-philosophical perspective can, perhaps, help us to appreciate
that “new” and “old” are interdependent, with continuity as well as
discontinuity, and that not only the present era has faced crucial
questions, whose solution involves ethics, law and politics too.
The paper focuses on the following points:
1. The question of knowledge that triggered research on prenatal life in
the pagan world.
2. The “great turn” following the advent of Christianity and the
predominance of the quest for salvation as the main motivation for
the search for knowledge.
3. The modern era: the twofold nature of the quest for knowledge and
meaning. The momentous turn produced by the Scientific Revolution.
4. The twentieth and twenty-first century: A: the significance of the
Italian as well as international debate on the voluntary termination of
pregnancy in the 1970s; B: the historical emergence of bioethics and
the changes in the view of the embryo, following the relocation of the
issue of prenatal life into the wider context of the defense of life; C:
the current renewed attention to the embryo as a form of
“otherness”. The wide agreement on its value and on specific forms of
protection.
BIOETHICAL IMPLICATIONS OF GLOBALISATION AND
SOCIETIES IN TRANSITION
Russell D’Souza, Chair, Asia Pacific Bioethics Network of the UNESCO Chair
Haifa; Centre for Asian Bioethics Initiatives and Studies, Australia; SRM
University, India
[email protected]
As Political Economic and Social changes sweep across the globe the term
globalisation acquires a meaning much beyond geopolitics and economics
to include the globalisation of culture unleashing powerful forces of
sociocultural transition
Transition is taking place in Asia, Latin America and Europe with influence
in some form in most regions of the world and humanity; Transition and
Transformation are occurring at a rapid pace with its problems Thus
Globalization acquires a meaning beyond economics and trade to include
culture. New culture of change in the established encompassing values
traditions, norms etc. with these new ethical challenges in many areas
and importantly Bioethics arises
Globalisation presents formidable challenges with respect to the
promotion of health and future health prospects increasingly depend on
it. Globalisation however presents also a dark side new poverty, new
instabilities, new uncertainties and new risks. Governments are having
less control over flows of information technology, disease, mobility of
people arms and financial transactions whether licit or illicit.
69
Frequently the ethical and social implications of aspects of globalisation
are recognised only after the fact, thus leading to fragmented and hastily
implemented strategies to remedy or modify unforeseen consequences of
the globalisation process
rd
In 2005 the 33 session of the general conference of UNESCO adopted
the Universal Declaration on Bioethics and Human Rights. This declaration
outlines the principals that respond to “ethical issues related to medicine,
life sciences and associated technologies as applied to human beings” The
declaration established international standards for bioethics that are
grounded in a language of rights and at its core a pledge to safeguard
human dignity and human rights in the context of bioethics.
This paper will review the bioethical implication of Globalisation as it
applies globally and to societies that are in transition resulting from
globalisation. Financial driven globalisation of sponsored clinical trials for
new treatments, First world health care at third world pricesGlobalisation, Bioethics and medical tourism and the global market of
health services its ethical implications of these globalisation
consequences to the host societies. Finally this paper will make
recommendations to address the bioethical implications and will suggest
that resources be used to anticipate the major reasons for bioethical
concern surrounding globalisation and to forecast future scenarios and to
formulate appropriate new policy options in this field.
THERAPEUTIC OBSTINACY: THE NURSING ROLE BETWEEN
AUTONOMY AND RESPONSIBILITY
Christian Dall’Olmo, Ospedale San Bortolo, Italy
[email protected]
The therapeutic choices daily evaluated, selected and interpretated by
the doctors in the clinical practice turn up to be generally appropriate and
proportionate, thanks to the doctor's experience and according to the
best scientific evidences. In some extremely rare situations this decision
can appear exaggerated, or even futile, sometimes not concordant with
the patient's will and conception of the quality of life. This is the case of
therapeutic obstinacy.
The nurse has the ethical, professional and legal duty to execute what is
prescribed, in vest of guarantor of the correct application of the
therapeutic prescriptions. However, if the therapy results not
proportionate, useless and not in agreement with the patient's will, the
situation can cause to the nurse a circumstance of strong conflict, both
personal and professional. This conflict should be resolved through the
use of dialogue between nurse and doctor, due to avoid irreparable and
dangerous divergences that might even lead the nurse not to accomplish
what is prescribed, creating unacceptable situations of care management
impasse.
Always considering values of autonomy, responsibility and collaboration,
the nurse, on one hand, has to find a way to equilibrate correctly the duty
derived by his profession itself that clearly describes limits and contexts in
which he can act; on the other hand he has to face the ethic obligation to
avoid meaningless pain to the patient and to respect his declared choices.
INTEGRATION OF MEDICAL LAW AND ETHICS INTO
MEDICAL TRAINING AND PRACTICE: LESSONS FROM THE
NIGERIAN STORY
Yohanna Yanshiyi Dangata, Head, Nigerian Unit UNESCO Chair in
Bioethics; Kaduna State University Medical School, Nigeria
[email protected]
Although the medical profession has been self-regulatory for time
immemorial, it has been characterised by malpractice for almost as long
its existence. This is not surprising for there has been no deliberate
integration of defined medical law syllabus into medical training until
th
about the second half of the 20 century, when medical law evolved in
response to outcry to inhumane practices in the profession. Henceforth,
has been the deliberate integration of medical law and ethics into medical
education in most developed countries. While this targeted oncoming
generations of doctors, the deficiency of knowledge of the subject
remained in pre-medical law trained medical personnel. Integration of the
subject into medical training to enable oncoming generations of doctors
to be adequately equipped for the medico-ethical dilemmas of the
profession, would resolve only the tip of the iceberg of the problem, for it
would take onward of three decades for doctors trained on the
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UNESCO Chair in Bioethics 9th World Conference
premedical law curriculum to retire from practice. The Nigerian holistic
approach is a triad involving targeting the medical profession by
integrating medical law and ethics into medical training for entrants into
medical school as well as appraisal courses for premedical law trained
doctors trained; public education on their medico-legal rights thus
equipping them to be vanguard of medical malpractices; and evolution
and integration of health law into the judiciary remedial to doctor/
patient disputes. The present report is the preliminary installment of this
holistic approach to the impact of medical law and ethics on health
services in Nigeria.
Acknowledgements: Kaduna State University, Kaduna, Nigeria, for
funding.
EFFORTS TO IMPROVING BIOETHICS TEACHING IN THE
SCHOOL OF MEDICINE IN INDONESIA
M. Sajid Darmadipura, Head, Indonesia Unit, UNESCO Chair in Bioethics
[email protected]
Background: It is recently revealed that the outcome of Bioethics teaching
in the Schools of Medicine has been declining the latest 2 academic years.
We are trying to explore what might be the causes of it and what would
be the possible action to improve the teaching.
At current there are 74 schools of medicine in the whole country that can
be grouped into 2 categories, the earlier established and the later (year
2000 and forth, 9 schools) established ones.
Method: A workshop was held on October 10, 2013 which was attended
also by our AP Network Chief, Prof. Russell D’Souza and Prof. Mary
Mathew, an expert from India.
Any possible cause and suggestions for improvement were explored
through a panel discussion. The panelist were the senior lecturers or
expert from the most outstanding schools (6 persons).The audiences were
the personnel involved in teaching, including the department chiefs and
secretaries and the chiefs of the specialist (clinical) program.
The main topics discussed were as follows.
• Who has the right to teach bioethics in the school of medicine in pre
as well as clinical departments?
• What materials/subjects/topics should be taught, limited to the
physicians competence produced by AIPKI (The Indonesian Association
of The Medical Institution) or others.
• The method(s) of teaching, lecturing, small group discussion, etc.
• The methods of assessment, MCQ, OSCE, case discussions, etc.
• The methods of teaching in clinical setting or how could we bring
bioethics to the clinical departments.
Result: In short:
1. Senior lecturers or clinicians with some additional ethical background
or structured, standardized bioethics teaching course.
2. Standardized national competence for physicians is the core materials.
Other materials may be added as needed.
3. The method of teaching, lecturing, self (literature) study, discussion
(PBL Method)
4. The assessment. Assessment needs tool to assess. The currently
available methods are not acceptable. Short essay, OSCE are not
appropriate due to the big number of students. Case/vignette with
MCQ is considered as most appropriate at current.
5. Bioethics in clinical setting insists the clinician participants. Clinician
with bioethics knowledge is considered better than bioethicist or
philosopher. Case conference will the 4 square of judgment and ward
round are considered the best.
VERTICAL HEALTH PROGRAMMES: ETHICS & EFFECTS ON
INTEGRATED HEALTH CARE DELIVERY SYSTEMS IN AFRICA
Bege Dauda1, Istifanus Joshua2, Yohanna Dangata2
1
KUL Leuven, Belgium
2
Kaduna State University, Nigeria
[email protected], [email protected]
A vertical health programme is one established to achieve specific
objectives for a specific condition or conditions. It may or may not have
links with other programmes. Many of such programmes originate from
donor organizations in developed countries for low income ones,
predominantly Africa. The stringent conditions and procedures set by the
donors can sometimes distort in situ integrated healthcare planning of
the recipient country. Such programmes are usually only for short
periods. The present paper makes a critical analysis of vertical health
programmes with respect to their challenges, advantages, disadvantages
and ethical implications on Integrated Health Care Delivery Systems in
Africa. We undertook full searches (May 2003 - April, 2013) of original
research, reports and reviews using Medline, PubMed, Embase and World
Health Organisation (WHO) Databases. Search words were ‘advantages’,
Africa’, disadvantages’ ‘ethical implications’, ‘integrated health care’
‘vertical programmes’, ‘vertical programmes’ and ‘Africa’. Findings show
that donor organizations usually offer their interventions with specific
regulations on the receiving countries. The stringent conditions and
procedures set by donors sometimes distort existing integrated
healthcare planning and budgeting of the recipient country. These
findings show that, in spite of huge resources invested in vertical health
programmes in Africa, some of them are still very far from achieving their
set goals and objectives. This results from their strict unilateral approach
in exclusion of horizontal programmes of recipient countries. We suggest
a complementary approach that would allow symbiosis of both vertical
programmes and integrated health care systems thus facilitating each
other to maximize their potential for efficiency and cost effectiveness of
their respective objectives.
Acknowledgements: Kaduna State University, Kaduna, Nigeria and Centre
for Biomedical Ethics and Law, KUL Leuven, Belgium for funding
EVAR FOR ABDOMINAL AORTIC ANEURYSM IN ELDERLY
PATIENTS: BIOETHICAL ISSUES
Lazar Davidovic, Serbia
[email protected], [email protected]
Open repair (OR) for Aortic Abdominal Aneurysms is more likely to be
cost-effective than EVAR on average in patients considered fit for open
surgery. EVAR is likely to be more cost-effective than open repair for a
subgroup of patients at higher risk of operative mortality. These results
are based on extrapolation of mid-term results of clinical trials. How does
that affect patients who are older than 80 years?
Late survival depends very much on the patients' age at the time of
surgery. The life expectancy in this group of patients even with successful
AAA OR or EVAR is not as good as that of the age-matched general
population. At this age life expectancy is 6 years, and in patients older
than 85 years life expectancy is just 5 years. On the other hand annual risk
of rupture in patients with AAA diameter 6 to 7cm is 10-20%. Cost of
EVAR is at least 10,000 euro per patient, which is still extremely expensive
for many countries in transition. Regarding all these facts some countries
(in transition) are forced to reassess ethical point of endovascular
treatment. Simplified there are not enough endografs for all patients.
Vascular surgeon in this situation has to decide how, when and who
needs by priority this expensive graft. Of course this is not medical
question but question that burden vascular surgeons from countries in
transition. Should we consider octogenarians as the first group of patient
who will endure this problem? How to decide who is a priority endograft
patient and who is not? Finally who is better candidate for endovascular,
open surgical or medicament treatment from financial point of view?
These are just some of the questions still open and haunting many
vascular surgeons from countries with poorer healthcare system.
BIOETHICS, WORD CURING AND MUSIC THERAPY
Susanna H. Davtyan, R. Nemishalyan, A. Balayan, Republic of Armenia
[email protected]
Only music has the power to create a character. It is possible to develop
true emotions through it. (Aristotle)
This abstract is the short representation of the report entitled “Bioethics,
Word Curing and Music Therapy”. It is known from ancient times that
music not only improves our mood but also cures from deceases. There is
a comparably new trend in medicine known as curing with music.
The curing effects of word and music therapy were still known in China,
India, Egypt, Armenia, Greece, etc. To have a positive effect on the organs
doctors prescribed “musical recipes”.
On most of the Italian musical instruments reached to our time from the
period of Renaissance one can found the following writ: “music cures body and
soul”. It should be noted here that not only listening to music but also playing
on musical instruments and singing has the same positive effect of curing.
Abstracts of Oral Presentations
The first serious research on the above mentioned facts was carried by
American writer-neurologist James Kornick in the USA in the 19th century.
It is interesting that for the studies he did not chose easily perceptible, popular
music of Verdi, Beethoven or Bach but Wagner’s music. He has studied the
effects of Wagner's music in the process of curing derangement. The works of
this composer had a positive effect. Since curing concerts have been organized
in the other hospitals too. After a number of years this practice and experience
was also used in European hospitals. The enthusiasm of doctors was great as
music had a relaxing effect and helped to cure neurosis and strengthened the
influence of medicine.
The selected topic also contains the information about the influence of
different musical instruments on human organs.
It is common knowledge that Nature consists of thousands of voices.
Music naturally being a series of voices has an influence on people, plants
and animals. It consists of a particular alternation of voices.
Our organism has an acoustic field and if music has the same or very close
acoustic character to it the desired influence will be achieved.
Armenian great composer Komitas having as basis the theory of four
elements carried out a very interesting and deep study elucidating the
way music cures. “Music has a connection with soul and body as it is
generated in the world of emotions and then it gains a body”.
The purpose of Music Therapy is to advance public knowledge of the
benefits of music therapy and to increase access to quality music therapy
services in a rapidly changing world.
All this is important to note here because music has direct connection with
Word Curing, voice is the crossroad where music and creative art meet.
THE ETHICS ENIGMA OF THE CANCER PAIN IN ITALY: FROM
PHARMACOLOGICAL THERAPY TO THE APPLICATION OF A
METHOD OF PSYCHO-SOCIAL CARE INTEGRATED
D. De Bartolo, I. Aquila, S. Boca, E. De Luca, C. Ricci, P. Tarzia, P. Ricci,
University “Magna Graecia” of Catanzaro, Italy
[email protected]
Introduction: The role of pain medicine is extended to many debates
dealt with epistemology, anthropology and ethics. The pain is present in
36-61% of cancer patients in relation to the type of cancer, stage and
treatment. For this reason, the physician who takes care of the cancer
patient should be able to identify early the pain and know how to treat it
properly.
Objective: The objective of this study is to value the current state of pain
management in cancer patients, particularly in the Italian population.
Materials and Methods: A comprehensive review of the national and
international literature on cancer pain and its treatment was done. The
literature search was done using PubMed NCBI. Were considered only
English language papers, in journals mainly trade oncology and
anesthesiology.
Results: In Italy, the year 2010 marks a turning point in the fight against
pain, at least at the legislative level. With Law 38 of 15 March 2010
"Disposition for access to palliative care and pain therapy", supported by
both the secular and catholic bioethics, is effectively ratified the citizen's
right not to suffer. To date, however, a physician out of three ignores the
existence of the Act 38 and over 40% of patients with pain receives
ineffective therapies. Among the possible causes of this bad pain
management have been identified: the complexity of rules governing
prescribing and distribution of opioids; social and cultural prejudices and
resistances about intake of opioids; need for formative of health
professionals.
Conclusions: We point out the importance of the extension of
homogeneous multidisciplinary intervention programs for the treatment
of cancer pain and the incentive of specific training on the pain therapies
in oncology among all healthcare professionals. It is hoped that such
training to take place during the process of university education in order
to lay the groundwork to create a new culture of pain therapy.
DEMAND FOR MALE CIRCUMCISION IS ON THE INCREASE
IN ITALY: ETHICS PROBLEMS
Maria Gloria de Bernardo, University Hospital of Integrated Verona, Italy
[email protected]
The problem of circumcision for African immigrants is a crucial daily issue.
And we cannot wait for other tragedies to happen in Italy, before looking
71
for a solution. The ethical problem is that a kid can die because some
unauthorized person performed surgery without the essential sanitary
equipment. Given this emergency status, underlined by those who face
the immigrant’s problems daily, it seems indeed necessary to make a
further official step to avoid new tragedies, because Africans will in any
case keep performing circumcision. Either they go back to their country of
origin, or they fly to London, where the surgery can be carried out in
public hospitals. However, both solutions are extremely expensive, and
most immigrants cannot afford them. In Italy the circumcision surgery is
free in all cases of therapeutical prescription (for instance in cases of
phimosis). An obliging practitioner might prescribe circumcision even
though a real therapeutical need is not present. My intervention will
analyze the reasons for the health structures, describing the history,
evolution, and the conclusion, finally asking some important ethical
questions.
PREVALENCE OF SPEECH LANGUAGE COMMUNICATION
DIFFICULTIES IN ITALIAN YOUNG OFFENDERS
Anna Giulia De Cagno, Federazione Logopedisti Italiani, Italy
[email protected]
The screening tool included narrative and deduction tasks, observation of
non-verbal communication, self-evaluation questionnaire, evaluation by
key-workers. The objectives were:
Identifying:
• The prevalence of communication disorders among young offenders
• The profile of communication skills of each youngster
• The lacking areas
Comparing:
• Data obtained by the experimental group and the control group, in
order to analyze the differences.
• All the subjects of the experimental group had difficulties in at least
one of the tasks; the individual profiles showed qualitative differences
in disorder severity in relation to each task; 23% showed inadequacy
in all the screening tasks. Though partial, these first results confirm for
Italy what is reported in the international literature on the prevalence
of SLCN in young offenders, compared to young people of the same
age group.
ETHICAL IMPLICATIONS OF THE COLLECTION OF
BIOLOGICAL MATERIAL AND RELEVANT INFORMATION
M. de Cristofaro, L. Terracciano, M. Moccia, P. Di Lorenzo, C. Buccelli,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
Bio-banks or bio-libraries are public or private institutions engaged in longterm preservation of human biological material and donors’ personal data.
By biological material samples it is meant cells, tissues, blood, DNA, as pool
of genetic information.
By personal data it is meant the genetic features, health and life style of
donors.
Bio-banks are certainly an advantage for the progress of science and public
health as they give large-scale access to demographics and the genetic pool
of world’s populations. Nevertheless there are concerns among citizens and
specialists that personal information and biological material can be used for
purposes other than those initially expected by donors.
In our opinion any biological material must be protected from any abuse.
The rules concerning the collection, preservation, treatment and processing
of biological samples and personal information should be harmonised at
world leve, reconciling the right to individual privacy and the possibility to
develop further scientific research.
On this matter the Ethics Committee of Università di Napoli Federico II,
applies a procedure worked out some years ago to inform and acquire
consent to the use and preservation of biological material for scientific
research purposes, consistent with the indications for treatment of genetic
data issued the Italian Authority on Privacy.
This form for informed consent is divided in multiple sections, each one
presenting a range of options for patients so as to give them, on a step-bystep basis, the possibility to express their specific consent to every single
activity of research and, in case, to deny consent to any of them. Though
cumbersome it may look, this process lets donors receive thorough
72
UNESCO Chair in Bioethics 9th World Conference
information before deciding about the fate of the biological material that
still belongs to them.
This form will be illustrated in the paper as well as the rules for filling it in.
POLICIES OF THE BASILICATA REGION FOR THE
OVERTHROW OF THE DIGITAL DIVIDE
Vito de Filippo, Italy
Structured interventions of Basilicata Region aimed to overcome the first
generation of the Digital Divide. Infrastructure for Ultra Wide Band, Cloud
and decentralized services for the PA, the digital signature and services to
citizens has been settled and others will be realized. Policies of the Region
of Basilicata have been structured for the dissemination of the
Information Society in areas of "market failure."
INCOMPETENT PATIENT AND THERAPEUTIC DESTINY
Alessandra De Gasperis, Carlo Pasetti, Fondazione S. Maugeri, Clinica del
Lavoro e della Riabilitazione, IRCCS, Italy
[email protected], [email protected]
A fundamental point is affirmed for the incompetent patient as well:
given that the legal system that puts the individual at the centre of its
own regulatory intervention and its values, such system cannot directly
impose nor tolerate the direct imposition of legal duties that harm the
patient's possibility to be the master of her own therapeutic destiny.
It cannot be maintained that the right to therapeutic autodetermination may be subtracted from the incompetent patient because
of her impairment.
In recent constitutional law thought, we see emerge the incompatibility
between a juridic approach imposing the obligation to be treated and the
personalistic approach embraced by our Constitution.
The patient's impairment, manifested in whatever form of incapacity, can
never lead ipso facto o ipso iure to damaging the fundamental rights of
the individual, and therefore to the violation of the principle of equality in
medical treatment. If we assume that the right to refuse treatment is "the
other side of the coin", in relation to the right to health, and given that
both are fundamental rights of the individual, we can therefore
understand and embrace the theory for which the exercise of both rights
cannot be impeached for the competent patient nor for the incompetent,
whatever her incapacity might be.
THE DNA DATABASES BETWEEN THE NEED OF JUSTICE
AND THE PROTECTION OF INDIVIDUAL RIGHTS
E. De Luca, I. Aquila, S. Boca, G. Cuda, D. De Bartolo, C. Di Nunzio,
C. Piccione, C. Ricci, S. Savastano, P. Ricci, University “Magna Graecia” of
Catanzaro, Italy
[email protected]; [email protected]
Introduction: Currently is taking place a growing use of genetic material
for forensic investigative purposes. This trend was followed by the
creation of DNA databases. In this context, the United States and the U.K.
are the leading countries, where the genetic profile of many people is
found in a database.
Objective: The objective of this study is to analyze the problematic
aspects of the creation and management of DNA databases.
Materials and Methods: A review of the national and international
scientific literature and legislation was done.
Results: The Italian legislator, according to the Treaty of Prum (2005), has
ruled the field of DNA databases with the L. 30 June 2009, n.85. Although
this law represents a considerable progress in the identification of
offenders, many relevant problems remain unresolved also due to the
lack of guidelines. In particular, the use of public DNA databases is
generating doubts about their compatibility with the requirements of the
protection of privacy. At the same time the main problematic profile is
the high potential of errors in genetic correspondences. Furthermore
there is a risk that psychological distress may unduly result in suspected
or innocent people.
Conclusions: The DNA databases have an enormous positive influence
both in the battle against crime and in scientific research. However, the
review has shown the existence of many problems and limits mainly
about the protection of individual rights.
CANCER, BIOLOGICAL THERAPY AND DISABILITY:
PROGNOSTIC AND ETHICAL ASPECTS
Onofrio De Lucia, Italy
[email protected]
Probably no other medical discipline must face issues of Bioethic,
Deontology and Sociology as Oncology.
For the oncologist even the communication of the diagnosis and
prognosis, often watered down and incomplete, raises important issues of
ethics and can have possible juridical consequences (also in terms of
validity of patient’s consent to the treatments).
Clinical trials, which are a constitutive element of each medical treatment,
although guaranteed by the prior approval of the relevant ethics
committees, often raises the dilemma of continuing or not the trial when
the preliminary results of the study show a clear advantage in one of the
two treatments.
The multiplication of predictive genetic tests for oncogenic risks raises
important bioethical problems whose solution requires the introduction
of appropriate guidelines regarding the choices about prevention.
The ethical issues regarding aggressive therapy, palliative care and
preventive declarations of will are also well known.
This essay will examine in depth the social protection of cancer patients
with an ethical approach to disability that goes beyond the mere
economic protection, aimed especially to ensure reintegration into
society and the labor market to the long survivors.
BIOETHICS AND COMPULSORY HOSPITALIZATION:
THE EVOLUTION OF CRACK IN SÃO PAULO, BRAZIL
Ruy de Mathis, Ibero-American Network of Eco-bioethics, Brazil Unit
[email protected]
Cities are living organisms and therefore have their own dynamics; they
grow, shrink and need systematic care and attention of the public
authorities responsible for caring and taking initiatives in each of the
various areas involved in their development cycles. In Brazil, until the
early 90s, crack was not known or used by the population.
In São Paulo, capital, derelict buildings, construction sites, commercial
establishments and even some streets of a central area of the city quickly
turned into a stronghold of crack users and dealers. When the need for
primary social support and medical assistance is not fulfilled, problems
grow systematically. The enormous and ever growing group of people
gathered in what became to be known as the “cracolândia” was only the
tip of the immense iceberg of the problems that would arise. Thousands
of crack users living in dilapidated buildings wandering on the streets
showing severe signs of addiction with visible physical and psychosocial
disorders reflected thousands of destroyed families. Twenty years later, in
2013, the compulsory hospitalization on the request of crack users’
families was approved in the city of São Paulo.
If we define bioethics as a new form of knowledge where biological
knowledge is combined with human values, we have to consider that the
adoption of these measures is an important step towards the physical
cure and social reintegration of these groups of users.
I think that now bioethics meets all the requirements to be the bridge
that will lead us to what I call "the second phase" of the compulsory
hospitalization measure: the reintegration of the citizens into their
families and society, in a productive way. It is a long, difficult and complex
phase that requires multi-focused and daily attention to the biopsychosocial segment of all involved and which will necessarily have to
bring together, closely but worldwide, the different professionals involved
in the study of and battle against crack.
COMMUNICATION IN SENILE AGE
Marta De Mattia, C.R.A.U.P. – Centro Residenziali Per Anziani Umberto
Primo, Italy
[email protected]
When you become older? What is the difference in communication
between the elderly and adults? Is there any difference in communication
between elderly living in institutes and the ones living at home? All these
questions arise in everyday relationship between speech and language
therapist and institutionalized older or resident.
Abstracts of Oral Presentations
In senile age the modifications of language may be relevant due to several
factors involved in the planning and execution of language. There may be
some modifications in voice, in sense organs and in language skills. It
could be observed an impaired fluid intelligence (aimed in acquiring and
in first organization of notion), and a conservation of crystallized
intelligence (suitable for the final reorganization of conceptual learned
functions). [Horn and Cattell, 1967]
This work aims to analyse the characteristics of the language during the
senile age and possible deficits in behaviour of elderly in relation to their
interlocutor. The efficacy of our communicative behaviour, with respect
of persons where indicators of senility are detected, is not just a shared
responsibility, but it’s dependents on the interlocutor.
The communication with the elderly has an ethical relevance that is
expressed primarily in respect of the individual as such, thereafter with
the increase of all his experiences and education and as well as of its
cultural background.
ETHICAL ASPECTS OF SHAM SURGERY
F. De Micco, M. Paternoster, G. Addeo, M. Niola, P. Di Lorenzo,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
[email protected]
Sham surgery, also called placebo surgery, is simulated surgery without
therapeutic surgical procedure.
In surgical studies on surgeries the purpose of sham surgery is the isolation
of the specific effects, which are to be ascribed exclusively to surgery, from
the range of the possible incidental effects caused, for example, by
anaesthesia, by incision traumas before and/or after surgery and by the
patient’s perception of having received a regular treatment. In so doing the
placebo effect is neutralized.
The various issues, amongst which the ethical ones, concerning the resort to
and the need for “placebo surgery” arose with particular force at the
beginning of the 1960s when two controlled, independent, double-blind
against placebo studies were published on cardiac patients suffering from
severe angina pectoris. One group of patients had been operated on for
bilateral internal mammary artery ligation, while the placebo group had
received only skin incision but not artery ligation.
In the literature there are other examples of placebo surgery. In a placebocontrolled study on patients suffering from persistent abdominal pain the
comparison was made between the lysis through laparoscopy of adhesions
ascribed to previous abdominal surgeries, and considered as the cause of
the pain, and laparoscopy only, without lysis of adhesions.
There are other studies on the arthroscopic treatment of patients suffering
from knee arthralgia secondary to knee osteoarthritis, of patients with
tennis elbow and the treatment of patients suffering from spinal disc
herniation. More recently the experimental treatment of Parkinson’s
disease by means of the administration of FCT caused sensation. In that case
patients in the control group were subjected to skull perforation (just like
treated patients) without receiving any treatment.
It is evident that placebo surgery entails remarkable ethical and deontological
issues, as patients in the placebo group are subjected to invasive procedures
without benefiting from the advantages associated to a treatment.
As a matter of fact, with reference to the sensational case of sham
administration of dopaminergic neurons from human embryonic cells in the
brain, we believe that there is no adherence to any ethical principle in
subjecting patients to skull perforation without any benefit for them.
Moreover we should ask ourselves what is the degree of information and
freedom of any patient who accepts the possibility of receiving such a
placebo treatment through informed consent.
If nowadays in the international scientific community the use of placebo in
clinical trials is still being debated, in our opinion the use of placebo surgery
is inacceptable as it causes pain and suffering and is invasive and dangerous.
PSYCHIATRIC COMPULSORY ADMISSIONS AT BEATRIZ
ÂNGELO HOSPITAL: A REPORT FROM ONE YEAR EXPERIENCE
Maria Joana de Sá Ferreira, Portugal
[email protected]
In Portugal compulsory admissions may be invoked in one of two ways:
via a standard procedure; or by an emergency department. Standard
involuntary placement takes place in three separate steps: application for
73
a court order, psychiatric assessment and a court ruling. In emergency
situations, once the assessment has confirmed the need for an
involuntary placement, the doctor on duty in the emergency room applies
to a court for the appropriate order. The court must then issue a ruling
within 48 hours. Although the underlying procedures are approximately
the same, the differences between the two groups of patients should be
taken in account as they probably bring to light the higher risk factors
associated with compulsory admissions.
We want to find out whether there are differences between patients
compulsory admission through the standard procedure and patients
involuntary treatment through the emergency department. Differences
between groups in not help-seeking behaviours may contribute to explain
differences in rates of compulsory admission.
On the basis of case-register data for the compulsory admissions at
psychiatric ward of Beatriz Ângelo Hospital we analysed the differences
between patient groups (“standard procedure” and “emergency
department”) during the first year of the Hospital/Psychiatric
Department. Data were collected from the Soarian Clinicals information
system regarding for example their pathways to compulsivity, clinicianrated reasons for admission, hospital stays, services referral after
discharge and social and clinical characteristics. The missing data were
supplied by the courts information.
Characteristics of the patient that influence the risk of compulsory
admission by the two methods includes diagnosis and certain
sociodemographic and social factors (ex. living alone). Caregiver burden is
associated with compulsory treatment by both procedures. High
incidence of psychosis and compulsory placement within minority ethnics
through standard and emergency means should be a concern. Variations
in the way in which compulsory measures are applied persist, but there is
room for improvement in the monitoring of the effects of these
differences and the types of services that are available.
THE PHYSICIAN’S DUTY TO INFORM IN PATIENT’S
DECISION MAKING PROCESS
Francesco De Stefano, University of Genoa, Italy
The acquired general rule, in democratic countries is that every person is
the owner of the legal right to determine what may be done to its own
body. In our country, according to the Principles of Italian Constitution
about freedom and self-determination (art. 2 and 13) and protection of
health (art. 32) conscious consent to medical acts is considered the
fundamental basis for a correct physician/patient relationship.
Moving from the mentioned statements, the “quality” (and quantity) of
information may be considered the core of patient’s decision making
process. Even if, in many cases can be very difficult for the physician to be
sure that information were adequately understood, the capillary
description of technical limitations and risks of proposed treatments is
still considered the gold standard in acquiring a valid consent, both in
every day practice and litigations in lawsuit.
Conclusively, to inform thoroughly patient about the risks and
opportunities of a proposed treatment may be the key to ensure the
respect of patient’s constitutional rights and an adequate protection from
exposure to legal action.
YOUR OWN PERSONAL GENOME: ETHICAL ISSUES IN
DIRECT-TO-CONSUMER (DTC) GENOMICS SERVICES
Amy Michelle DeBaets, Kansas City University of Medicine and
Biosciences, USA
[email protected]
Direct-to-Consumer (DTC) genomics services, such as 23andMe and
deCODEme, offer testing and information about a wide variety of possible
genetic mutations, ancestry information, and genetic risk factors to
individuals without interpretation or intervention of a physician or other
healthcare provider. While there is much to be learned from this new and
relatively inexpensive availability of individual genetic information, there
are significant ethical risks as well.
This pilot study, covering the most widely used and least expensive
service (23andMe), is designed to provide an ethical analysis of research
practices, informed consent processes, data reports given on genetic
risks, traits, and ancestry data, and social media available through the
23andMe service. Some issues that were found include questions of:
74
UNESCO Chair in Bioethics 9th World Conference
• Privacy, confidentiality, redisclosure, and discrimination
• Consumers’ unknowing and uncertain involvement in research /
informed consent
• Social media sharing of private health data
• Racialization of genetics
• Problems with data anonymization
• Unmediated information / consumers’ lack of understanding risks
• Validity / reliability questions
These significant ethical issues become critical to address as the services
expand to reach people around the globe, collecting vast genetic data with
minimal accountability for the ways in which the data are used. This ethical
analysis can be used as a first step toward better regulation and oversight of
the services, as well as fostering further study of the ways in which
consumers utilize the data to make healthcare and related decisions.
CULTURAL DIFFERENCES AND THE INTENTION TO
UNDERGO AN ELECTIVE ABORTION IN CASE OF A FETAL
ABNORMALITY
Sara Dejevsarov1,2, Sivia Barnoy1
1
Tel-Aviv University, Israel
2
Gertner Institute for Epidemiology and Health Policy Research, Israel
[email protected]
Background: Technological developments in fertility led to early detection
of neonatal abnormalities, on the one hand. On the other, the recognition
of a woman's right to her body, led to legal changes which permit
abortion under different conditions. The decision whether to undergo an
abortion following the discovery of a fetus abnormality is effected by
culture and attitudes.
Methods: The study was based on the planned behavior theory (Ajzen &
Madden, 1986) and was conducted in three countries: Israel, Germany
and Cyprus. The questionnaire presented different scenarios where the
woman is pregnant and her fetus is diagnosed with an abnormality of
three types (cognitive, health related and esthetical) with different
severities. After each scenario the women were asked about their
attitudes, sense of control and subjective norms regarding performing an
abortion and about their intention to undergo an abortion.
Results: 340 women participated in the study (134 Israeli, 115 German
and 91 from Cyprus). The results show that positive attitudes towards
abortion were significantly correlated with the intention to abort. Culture
had an effect on attitudes with Israeli women more in favor of abortion.
Subjective norms differed by culture being lower in Germany as compared
to Israel and Cyprus. Sense of control was higher among Israeli women
feeling more control.
Conclusions: The intention to abort when a fetus defect is diagnosed is
influenced by culture. When the women feels more control, holds more
positive attitudes and there are higher subjective norms there is more
intention to abort with no regard to the type of defect and its severity.
1
2
ETHICS ASPECTS ON THE MEDIATION CROSS-CULTURAL
ACTIVITIES IN AOSTA VALLEY
Fulvia Dematteis, European Centre for Bioethics and Quality of Life –
UNESCO Chair in Bioethics Unit, Italy
[email protected]
On the report presentation, the main matter will be focused on the
mediation cross-cultural relating to the experience of training course and
jobs of all specific professional profile.
Following are the topics that will be discussed:
• Fear, furor, unfeeling in the intimacy relationship.
• How to build good capacity to relationship throughout different ethnic
groups.
• No harm
• Take care
• To feel
• To be patient
• To be curious
• Give space
• Give to us a new possibility
• To practice the imagination
• To have an ethical vision of the life
• Dispute survive
CRIMINAL OFFENSE OF ASSISTED SUICIDE –
NEW LAWS AND OLD DILEMMAS
MUTUAL LEARNING TO OVERCOME THE RISK OF
SELF-REFERENCING IN HEALTH PROFESSIONS
1
experimental method. In this context a generic reference to professional
values may remain ambiguous and end up reinforcing this attitude of selfreferencing. Values without reference fall prey of those who have the
strength every time to redefine their content, preventing any real
confrontation, debate and mutual learning.
How can we overcome this self-referencing attitude? Reasonably
recognizing that what is true in our human experience is not irrelevant to
our work. We need to open the door to the cultural and educational
relations that express the full extent of our human experience and can
actually sustain our demanding profession. Proper laicity is not
indifference, but can be the engine of the new curriculum initiative.
As an example, at medical school and in CME programs for health
professionals, we perform the optional course “The contribution of
Christian experience to health professions”, followed by dedicated
periodical laboratories. The program includes encounters with effective
professional experiences that do not deny the relevance of motivations
and their impact on the technical action. This is an example that wishes to
stimulate similar and plural contributions. Our experience indicates the
need to favor positive interaction among professionals, aimed at
expressing judgments and initiatives on issues dealing with our
profession, having as starting point all resources of the human
experience. The confrontation that stems from such aperture should be
made methodical, to give energies to the new curriculum initiative.
3
Antonio Del Puente , Antonella Esposito , Vinicio Lombardi , Aldo Bova ,
Raffaele Scarpa1
1
University “Federico II”, Italy
2
P.O. San Giovanni Bosco, Italy
3
P.O. San Gennaro, Italy
[email protected]
The deterioration of the relationship between doctors and patients and
the loss of altruism and collegiality are today the most important
questions for the efficiency of the health professions. The UNESCO Chair
of Bioethics initiative to form a new curriculum of medical ethics is critical
in this scenario. Starting from our teaching experience we would like to
outline an aspect of current culture which jeopardizes this effort and to
suggest a supportive approach.
The technical-scientific culture claims to be the only approach which can
generate reasonable conclusions. This self-limitation of the reason
confines to “subjectivity” all the considerations on the complex unity of
the human being and its absolute value, which are absolutely reasonable,
although not demonstrable by experiment. Main consequence is the
mechanistic reduction of our profession that confines the medical action
to a neutral technique which is ineffective and against the spirit of the
Davor Derencinovic, University of Zagreb, Croatia
[email protected]
The role of substantive criminal law is, inter alia, to protect fundamental
values deeply rooted in the constitutional order. One of the most
important values on this list is right to life, which has been considered, at
least in European legal context, as a non-derogable right. In this regard,
right to life openly and undoubtedly put in question right of a person to
take his/her own life. One may assume that such right does not exist
irrespective the fact that suicide as such triggers no criminal liability for
the subject. On the other side of the spectrum, aiding and/or inciting in
another person suicide are not only wrong from the ethical perspective
but also amount to criminal liability known in most contemporary legal
systems. However, the approach to the banning/criminalizing of aiding
and inciting another person to commit suicide differs significantly in terms
of the motive, different legal characterization of various forms of
participation/contribution (legislator is often much more lenient to those
who just assist another person in “dignified dying” than to those who
influence his/her will to commit suicide) etc. This paper will examine
various legal aspects of assisted suicide from the perspective of recently
adopted Croatian criminal legislation as well as from the comparative
legal perspective. The jurisprudence of the European Court of Human
Abstracts of Oral Presentations
Rights in the most recent and relevant cases (i.e. Haas v. Switzerland) will
also be taken into due account.
PHARMACISTS – PROMOTERS OF GOOD HEALTH:
NEW PROFILE OF PROFESSIONAL RESPONSIBILITY
T. Devoti1, M. De Padova2
1
President, Pharmaceutical Society of Valle d’Aosta, Italy
2
L.H.A. Valle d’Aosta, Italy
[email protected]
The aim of this study is to underline the changing role of pharmacists over
the last few years with particular focus on professional responsibility.
Pharmacists traditionally prepared medicines prescribed by doctors and
since the 1960s were the purveyors of commercially produced medicine:
today’s pharmacists have taken on a different role and are first-line in the
health care sector dealing with patients’ physical and psycho-physical
problems and/or wellbeing. The vast and unending supply of health care
and general sanitary products on the market require that pharmacists
now are able to answer to and solve any number of growing patient
needs. Thus pharmacists must adhere to and are subject to any violation
of all professional regulations dictated by law: imprudence, negligence,
failure to correctly observe and apply laws, regulations and orders are all
situations commonly faced by pharmacists of our times. This study
focuses on some specific aspects which should be observed and practised
by today’s professionals, examples of good practice which protect and
serve both pharmacists and their patients.
DEVELOPING POLICY FOR BIOBANK RESEARCH IN
SOUTH AFRICA: THE WITS HUMAN RESEARCH ETHICS
COMMITTEE (MEDICAL) APPROACH
Ames Dhai, Yolande Guidozzi, University of the Witwatersrand, South Africa
[email protected]
Globally, growing prominence is being placed on the establishment of
Biobanks. South Africa too has joined the “Biobanks Olympics”. The
importance of research involving human genetic or genomic information
analysed together with other personal or health data for the
understanding of multi-factorial diseases has increased significantly over
the past few decades. This type of research is vital to improvements in
detection, prevention, diagnosis, intervention, treatment, and cures,
including those for the development of new products and services.
However, the open and evolving nature of biobanks has profound ethical,
legal and social implications for individual and group autonomy, informed
consent, privacy, confidentiality, secondary use of samples and data over
time, return of results, data sharing, and benefit sharing with
communities and premature, unplanned closure. Complexities also
emerge because of increasing international collaborations, and differing
national positions. Public consultation and involvement are very
necessary to the success of biobanking. Implementing national laws in an
internationally consistent manner is problematic.
This presentation starts off with a brief description of biobanks and then
goes on to discuss some associated ethical and legal complexities in this
context. It then describes the process utilized at the Human Research
Ethics Committee (Medical) at the University of the Witwatersrand,
Johannesburg in establishing its Biobanks Ethics Committee and
developing policy for the approval of the establishment of Biobanks and
Biobank Research. This Policy has been approved by the National Health
Research Ethics Council for inclusion in the country’s national ethics
guidelines.
IS THERE AN ETHICAL GROUND FOR DEROGATING FROM
INDIVIDUAL INTEGRITY PRINCIPLES IN FAVOUR OF
SCIENTIFIC PROGRESS IN CLINICAL TRIALS?
P. Di Lorenzo, M. Paternoster, M.A. Zinno, M. Niola, C. Buccelli,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
Biomedical research and experiments in humans shall be based on the
principle of the safeguard of the health (psychophysical integrity of the
75
person) and dignity of the person although pursuing their inherent goal of
acquiring new knowledge.
The Nuremberg Code was a turning point in the protection of the rights of
patients involved in experiments but only in later international ethics
documents the primacy and superiority of the individual over collective
interests in research protocols has been clearly stated.
The need for scientific trials to provide results that are useful for the
whole society is not ignored because otherwise trials on healthy
volunteers, which are of no direct usefulness to them, would not be
permitted.
Yet it has been clarified that the primary goal in scientific trials is to
acquire insights and find therapies useful for single individuals.
However, in our opinion the protection of the well-being and safety of
every single individual involved in a trial cannot be considered nowadays
in absolute terms with respect to the possibility of obtaining useful
knowledge for the whole society. After decades of trials on humans in
compliance with strict rules the authors deem there is new room, with all
due caution and juridical limitations, for solidarity-based derogations
from the individual psychophysical integrity principle in favour of the
society.
Hence, precise criteria are needed to allow for these derogations in
favour of the progress of mankind and in total safety. In this sense,
voluntarily giving up one’s own psycho-physical integrity as a contribution
to research is not to be interpreted as a waiver of the constraints
protecting the individual rights of the patient involved in the experiment
but as the acceptance of risks by the patient after thorough assessment of
all time-related, dimensional, anatomical and functional aspects and
provided that all ethical and juridical norms are complied with.
THE PSYCHIATRIC DISEASE IN THE ELDERLY, CURRENT
THERAPIES, DISABILITY AND ETHICAL CONSIDERATIONS
Nicola Di Matteo, INPS, Italy
[email protected]
The psychopathology of the elderly patients must necessarily deal with
some epistemological questions related to the meaning of the illness,
valuation of the symptoms, therapy and ethic limits of the medical
treatment. It’s not only the usual simply question “… is the old age an
illness for itself?”, we have also to face the inner anthropological sense of
the old age, despite the frequent non physiologic meanings, which the
present social cast of mind expect to attribute to the ultimate time of life.
DISORDERS OF SEX DEVELOPMENT: WHICH FRONTIERS IN
A SCIENTIFIC, BIOETHICIST AND SOCIAL DEBATE?
1,2
1,2
1,2
Francesca Dicé , Maria Auricchio , Immacolata Parisi ,
2
1,2
1,2
Mariacarolina Salerno , Fabiana Santamaria , Paolo Valerio
1
Interuniversity Bioethics Research Centre, Italy
2
University of Naples "Federico II", Italy
[email protected], [email protected]
The birth of a child with a Disorder of Sex Development (DSD) raises many
questions about the psychological, medical, ethical, legal and social
theme: these are congenital conditions in which development of
chromosomal, gonadal, or anatomical sex is atypical and the most
common are Turner's Syndrome, Klinefelter's Syndrome, Congenital
Adrenal Hyperplasia, Morris’s Syndrome and other conditions with
androgens’ reduced production or peripheral insensitivity. DSD are
diagnosed, in most cases, at birth, sometimes the difficulty in establishing
a correct diagnosis as earliest can cause a medical and psychological
emergency for the child and his/her family, especially about the gender
assignment. Once diagnosed, some children with atypical genitalia are
subjected, during the first years of life, to surgery to "normalize" the
appearance of the genitals, while other children will follow a
pharmacological therapy for a lifetime. Difficulties in the diagnostic and
therapeutic treatment, eventual gender dysphorias during the child’s
psychosexual development, implications in the surgery and complex
issues about the informed consent in children and adolescents are open
questions that raise a delicate bioethical and social debate. Therefore, the
primary objective of the interdisciplinary team working in this field is an
integrated medical and psycho-social work, with particular attention to
the well-being of children with DSD and their families.
76
UNESCO Chair in Bioethics 9th World Conference
THE BALINT METHOD PRACTISING IN BULGARIA
Sv. Dimitrova, V. Hristova, G. Foreva, Trakia University, Centre ‘Dinamica’Sofia, Medical Academy of Plovdiv, Bulgaria
[email protected]; [email protected]
Introduction: The work of Michel Balint is well known and appreciated in
all over the world, including Bulgaria. A number of Balint groups have
been created on primary health care level in Bulgaria in three university
towns – Sofia, Plovdiv and Stara Zagora for three years by now.
Aim: The latest experience of the Balint method implication to be
described and analyzed, with a special accent on the ethical dilemmas in
the cases that are discussed.
Methods: focus group analysis, quality analysis of cases
Results: A certain difficulties due to the contemporary Bulgarian context
are underlined. Despite them, evidence for acceptability and usefulness in
practicing Balint method in Bulgaria is discussed. The importance of this
practice comes from good opportunity to share feelings, not only rational
arguments with peers and to find new ways of solving complex cases
especially when medical ethics is concerned.
In conclusions: Despite difficulties we expect a good perspective and
future development of Balint method in Bulgaria especially concerning
dissemination of this practice.
KNOWLEDGE, ATTITUDES AND PRACTICES OF NURSING
ETHICS MEDICAL STUDENTS IN MALI
Samba Diop, Awa Keita-Thera, Edwige Tongo (student), Seydou Diarra,
Kaourou Doucouré, University of Science, Technology and Technology
Bamako, Mali
[email protected]
The ethics of care refers to care of the practical challenges in urban
African university hospital. Indeed, despite the teaching of medical ethics
and the existence of transnational biomedical research programs in Mali,
medical students practice without informing and obtaining the voluntary
and informed consent of their patients. This study aims to reveal the
knowledge, attitudes and behavioral practices of medical students in
medical ethics and nursing.
It is a descriptive cross-sectional study in random held in the Faculty of
Medicine and Dentistry and the university hospital of Bamako District
from March 2011 to April 2012 with 375 students in 3rd to 6th grade.
Students had heard, respectively ethics of care (97.9%), ethics of research
(72.5%) and medical malpractice (99.2%) and the right was their main
source. Only 10.4% of students interviewed knew the three basic ethical
principles and direct observations showed that the majority of students
did not give hospital did not inform their patients and did not require
their consent.
Two major lie in the lack of privacy during patient consultations and
request medical students to the academic teaching of ethics to be
followed by practical guidance in hospital.
INFORMED CONSENT IN CZECH REPUBLIC AND SLOVAK
REPUBLIC – ETHICAL AND LEGAL ISSUES
Adam Dolezal, Czech Republic
[email protected]
This work deals with the relationship between legal responsibility and
informed consent in medical malpractice cases. The issue of informed
consent is examined in connection with legislation in the Czech Republic
and Slovakia, and individual court cases and trends in judicial decisionmaking in these countries are presented. Court decisions are then
compared with current bioethical principles and other bioethical theories,
and the cases are assessed according to whether such bioethical
principles were applied. The general aim of this article is to demonstrate
how the judicatory reacts to the results of bioethical literature.
Unlike in Common Law cases, Czech and Slovak legislation is based on the
natural law tradition of informed consent; so patients may have a right to
compensation in cases where psychological integrity is infringed upon,
because it is a due to the failure to respect of the autonomy of the
patient.
Furthermore, Czech and Slovak laws of informed consent are based on
subjective standards of understanding and disclosure. Therefore, the
adequacy of information is of paramount importance. With informed
consent, specific informational needs of the individual person should be
referenced and understood, rather than defaulting to the hypothetical
“reasonable person” (objective standards). Problems arise from using
subjective standards, as evidenced by individual cases; in such cases, the
causation between erroneous (or missing) disclosure and damage is
difficult to prove because plaintiffs usually testify that they would not
have consented if the risks had been fully disclosed, but their views might
be distorted by the experience of a negative outcome. Bioethical theories
suggest that subjective standards leave physicians at the mercy of their
patients' self-serving hindsight in court.
In conclusion the differences between the theoretical bioethical basis and
actual medical practice are so abysmal that it raises the question of
whether informed consent should be reviewed and edited by other
means. The basic problem is the persistent “silence” between patient and
doctor. The new consensus in medicine should be one that respects
patients as individual subjects.
MEDICAL LAW UNDER THE STRASBOURG INFLUENCE:
ON A ROAD TO IUS COMMUNAE?!
Tomáš Doležal, Czech Republic
[email protected]
While the overall importance of European Union law for regulation of
medical intervention remains limited even after the Lisbon Treaty, this is
not the case of the European Convention for the Protection of Human
Rights and Fundamental Freedoms signed in 1950. This core instrument of
European human rights´ protection system guarantees now a classical set
of civil and political rights many of which many are of a direct concern for
medical intervention and their broader legal context. The most important
rights in this regard include the right to life (issue of artificial
insemination, abortion or euthanasia), the prohibition of inhuman or
degrading treatment (mutilating interventions), the right to personal
freedom (issue of obligatory medical treatment and detention), the right
to privacy (consent to medical intervention, compulsory treatment
including vaccination, medical privacy, personal data protection) or the
principle of the protection of human dignity (horizontal importance).
Moreover, case-law of the European Court for Human Rights seated in
Strasbourg – empowered to scrutinize the respect of the ECHR in its
Signatory States – has substantially contributed to the expansion of these
rights and freedoms which now seem to tend to recognition of right to
health and to favourable environment. Due to the binding character of
the ECHR for its Signatory States – multiplied in some countries including
the Czech Republic by the special constitutional status attributed to the
ECHR with regard to domestic legal rules – the ECHR has undoubtful
potential to lay down the European ius communae standard in the area of
legal aspects of medical intervention.
TOGETHER RATHER THAN SEPARATELY – CONDUCTING A
DISCUSSION ABOUT ETHICAL DILEMMAS IN A REGIONAL
MULTIDISCIPLINARY MULTI-PROFESSIONAL FORUM
1
2
Sophy Dombe , Ruth Kaplan
1
Assaf Harofeh Medical Center, Israel
2
Academic Nursing School, Assaf Harofeh; Chairperson, Nursing Ethics
Bureau
[email protected]
The option of prolonging patient's survival is sometimes accompanied by
the verdict of poor quality of life. Such situations raise ethical dilemmas
with respect to prolonging survival at the expense of quality of life.
About a decade ago, an Ethics Bureau was founded by the Israeli Nursing
Association, the role of which, is to cope with those ethical dilemmas
raised in the nursing practice. Over time, it became clear that even the
Ethics Bureau cannot provide an appropriate setting for discussing daily
ethical issues due to its loose connection with the events occurring in the
clinical fields.
Thus a regional ethics forum was established. It includes general, geriatric
and psychiatric hospitals and insurers (HMOs).
The new model enables collaboration and learning in various clinical
fields, while providing the opportunity to analyze ethical issues from
various perspectives. The forum has become a professional resource. Its
members experience obligation and responsibility to discuss the
Abstracts of Oral Presentations
dilemmas raised at their workplaces and to involve the teams in the
discussion and the solutions proposed.
Our vision is to create a multi-professional forum including specialists
from the medical and paramedical professions, who will share the ethical
dilemmas raised in their professional practice with specialists in the field
of nursing.
In conclusion, the model presented here may serve as a prototype for
establishing regional ethics forums over the country, which will serve as a
resource for the teams in their professional practice and a link between
the actual field and the National Ethics Bureau.
LEGAL ASPECTS OF “THERAPEUTIC OBSTINACY”
Carmine Donisi, International Office for Bioethics Research of the
European Center for Bioethics and Quality of Life of the UNESCO Chair in
Bioethics Unit – Ethics Committee “Carlo Romano”, University of Naples
Federico II, Italy
This paper starts by acknowledging a contradiction: on one hand there is
unanimous consensus on the foundation of the prohibition of what is
known as therapeutic obstinacy, on the other there is disagreement on
how to identify it and on the ways it is practiced.
Hence a dangerous uncertainty for operators, that this paper aims at
sweeping away by reviewing current practices, international and national
regulations, codes of ethics and some significant judge’s sentences in the
light of the unstoppable scientific progress and the cultural diversity that
characterize contemporary society.
The respect of the prohibition of therapeutic obstinacy inevitably recalls
such phenomena as "therapeutic abandonment" and the hot topic of
euthanasia, in its problematic form called passive euthanasia, in
particular. The Author will delimit these concepts so as to provide
operators with useful practical criteria.
Some meaningful clinical cases will also be illustrated to exemplify the
results of the investigation
In conclusion, some short remarks will be put forward on new potential
fields of application of therapeutic obstinacy. The issues – not of minor
importance – concerning the liability from abuse of therapeutic obstinacy
will only shortly be alluded to since they will be thoroughly presented by
other authors.
THE BIOPOLITICS, ETHICS AND LAW OF COMPULSORY
DNA TESTING OF REFUGEES
Edward S. Dove, McGill University, Canada
[email protected]
The intersection of genetics, bioethics, law, and immigration has received
little attention from scholars. The significance of this scholastic lacuna is
intensified in the case of refugees; solutions are acutely needed as a
result of recent changes in U.S. refugee policy. My paper will remedy this
lacuna and offer ways to devise solutions by analyzing the embedded
bioethical and legal ramifications of a new policy that took effect in
October 2012. The policy now requires refugees seeking family
reunification via the Department of State’s Refugee Family Reunification
Priority Three (or P-3) Program to undergo DNA testing to prove they are
“legitimate”, i.e., genetically related, family members. The U.S. has
previously used DNA testing in immigration and refugee matters on a
“voluntary” basis, serving as a last resort measure to verify an alleged
biological relationship where no other credible proof exists. This is no
longer the case for P-3 Program refugees. The putative purpose of the
differential treatment is fraud prevention, as well as alleged secondary
benefits such as increased national security and greater efficiency in
refugee claims processing. Yet upon close inspection, the forthcoming
policy generates significant concerns.
From a bioethical and legal perspective, required DNA testing unjustifiably
narrows the meaning of “family”, and may violate domestic laws and
international human rights instruments regarding voluntary informed
consent, privacy, and anti-discrimination. The paper posits that traditional
legal solutions may not represent the most suitable or promising remedy
to quell the tide of a collective march towards an intractable risk society
that views refugees as potential frauds. I propose some solutions that
mitigate the impact of the new policy, allowing for a nuanced
understanding of family and a firmer understanding of the inherent but
77
uncertain risks of DNA technology in the immigration and refugee
context.
DISCRIMINATION OF MIGRANTS IN HEALTH CARE:
A SYSTEMATIC LITERATURE REVIEW
Daniel Drewniak (PhD Student), Tanja Krones, Verina Wild,
Institute of Biomedical Ethics, University of Zurich, Switzerland
[email protected]
It is evident that some groups of migrants are vulnerable in relation to
health and medical care. The reasons for that are heterogeneous and
complex and range from structural reasons, like policy of integration, over
language barriers to discrimination in the health care setting. Indeed
several studies examine how migrants subjectively perceive
discrimination through health care personnel. The evidence on
subjectively experienced discrimination must lead to the assumption that
migration- and residence status influence medical decisions. In the
context of justice in health care provision this touches upon core ethical
values.
However, studies that confirm these findings by examining the behavior
on the side of health care professionals are rare. From a methodological
point of view the challenge exists how to empirically measure the
influence of social factors, like migration background, on the behavior of
the health care personnel without falling prey to a social desirability bias.
In an attempt to understand the influence of migration background or
ethnicity on the behavior of health care professionals we conducted a
systematic literature review. The aim of the review was to collect studies
that focus explicitly on the attitude or behavior of the health care
professionals and not on the subjective perception of the patients. After
defining a search term, relevant databases and inclusion criteria, we
examined title and abstracts of the studies. By reviewing the full texts of
all included studies we not only synthesized data but also evaluated the
quality of the methods used in the studies.
In our presentation we will 1) describe the method of our systematic
review, including the difficulties to evaluate the quality of the studies. We
will then 2) sum up the findings of our systematic review; Finally we will 3)
discuss our findings in the context of their ethical implications of justice in
health care in relation to health care provision for certain groups of
migrants.
COPING WITH RELIGIOUS PLURALISM IN PUBLIC
BIOETHICS DISCOURSE
Chris Durante, St. John’s University; Marymount Manhattan College;
McGill University, USA
[email protected]
This presentation will discuss the foundations of a method of discourse
for public bioethics commissions that can aptly cope with the difficulties
that arise when religious, cultural and moral differences are given due
recognition in bioethical deliberations regarding policies. Acknowledging
the need for shared guidelines and common codes and norms, this is a
method that seeks consensus without overlooking the importance of
respecting difference. While consensus does indeed entail agreement we
must always be cognizant of the fact that there are levels of agreement to
be achieved. Hence, this method proposes a multifaceted and multitiered approach to consensus building. Once interlocutors have arrived at
agreement regarding a set of norms or guidelines it will be argued that it
is necessary to invite interlocutors to recognize and affirm diverse
interpretations of a given norm. In this way it is my hope that the deeper
doctrinal disagreements that often ensue after initial consensus has been
reached can be avoided by providing a richer and more pluralistic basis for
interpreting shared norms. Furthermore, in cases in which attempts to
reach consensus have been exhausted and the prospects for agreement
upon shared truth claims seem unlikely, this method suggests that we
shift the focus of our inquiry away from more methods of ethical
agreement aiming at the discovery of mutual truths toward discussions of
those practices and behaviors interlocutors can respectively and mutually
tolerate. In this way an attempt to reach consensus regarding that which
each can permit once their fundamental disagreements have been
acknowledged in an attempt to accommodate one another.
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UNESCO Chair in Bioethics 9th World Conference
ETHICS & MILITARY MEDICINE: AN ANALYSIS OF
MEDICAL CIVILIAN ASSISTANCE PROGRAMS &
THE PROBLEM OF DUAL LOYALTY
Sheena M. Eagan Chamberlin, USA
[email protected]
Practicing military medicine is a morally complicated job. While physicians
are generally understood as owing moral obligation to the health and
well-being of their individual patients, military health professionals can
face ethical tensions between responsibilities to individual patients and
responsibilities to the military institution or mission. The apparently
conflicting obligations of the two roles held by the physician-soldier are
often referred to as the problem of dual loyalties and have long been a
topic of debate with the field of military medical ethics. This conflict lies at
the intersection between the profession of arms and the profession of
medicine, as institutionalized by the modern American military. This
paper examines the embedded case of medical civilian assistance
programs. These programs represent a programmatic example of the
problem of dual-loyalty, because these missions are characterized by the
use of medicine within the military for strategic goals. Thus, a physician is
expected to meet his obligation to his role as soldier, while also practicing
medicine. These programs involve obligations inherent in both roles of
the physician-soldier and thusly they serve as excellent exemplars for the
problem of dual loyalties at an institutional level. While humanitarian or
altruistic goals are often associated with the medical profession, the
strategic intent behind medical civilian assistance programs differs from
medicine’s humane purpose. This presentation will explain, explore and
analyze the history of these programs, which dates from the
Revolutionary War to today.
ENHANCING HUMAN PERSONS: DOES IT VIOLATE HUMAN
“NATURE”?
Jason T. Eberl, Indiana University – Purdue University Indianapolis, USA
[email protected]
Debate concerning the enhancement of human capacities through
genetic, pharmacological, or technological means often revolves around
the question of whether there is a common “nature” that all human
beings share and which is unwarrantedly violated by enhancing a human
being’s capabilities beyond the normal level defined by this shared
“nature.” In this presentation, I rehearse briefly some historical
philosophical views on what features might define human nature – from
thinkers as diverse as Aristotle, John Locke, and Daniel Dennett – noting
the emergence of a consensus upon certain key traits that define one, not
as “human” per se, but as a “person” who possesses inviolable moral
status as such. I will argue, based on this emergent consensus, that there
is a commonly shared nature among human persons. Understanding the
qualities of this nature, which include self-conscious awareness, capacity
for intellective thought, and volitional autonomy, informs the ethical
assessment of various forms of human enhancement. Some forms of
enhancement for certain types of capacities will be evaluated as not only
morally permissible, but even desirable from the perspective of what
constitutes the “flourishing” of human persons in our fundamental nature
– for example, enhancing one’s immune system or cognitive capacity for
memory. Other forms of enhancement run the risk of detracting from
human flourishing or altering one’s nature in ways that would lead to
complicated social relationships with other human persons, with the
result that such forms of enhancement ought not to be pursued – for
example, attempts to enhance one’s emotive responses.
LAW STUDENTS AS AGENTS OF SOCIAL CHANGE – MORAL
VALUES AND ATTITUDES IN ZEFAT COLLEGE SCHOOL OF
LAW
Yael Efron, Yaron Silverstein, Zefat College School of Law, Israel
[email protected]
Zefat Law School hosts a wide range of students from many cultures and
backgrounds: secular and religious, Jews and Arabs, Muslims, Christians
and Druze, men and women, young and old. The classroom in the school
is a microcosm of Israeli society, in all its forms. This atmosphere creates
opportunities for both active and passive learning of another culture and
assimilation and deepening the normative and moral world of each
student.
In this presentation we try to characterize major trends that led and lead
students from the Arab sector to study law at Zefat College, and the
practices which they want to take as future lawyers. The underlying
assumption of this study is that students hold certain values and norms,
expressing narratives of a minority, and later in the course of their
studies, they focus their activities in the enactment of these norms in
their society. The research question examined whether law school made
changes in these normative values, and in what areas the students want
to serve as agents of change in their fields later in their career. An
interesting question in this context concerns the status of the practice
within the traditional Arab society.
DEVELOPMENT OF MOLECULAR PATHOLOGY
INFRASTRUCTURE IN NIGERIA: THE EMERGING
OPPORTUNITIES, LEGAL AND ETHICAL IMPLICATIONS
O.Y. Elegba, M. Achi, J. Chok, I.A. Joshua, Y.Y. Dangata, Kaduna State
University, Nigeria
[email protected]
While molecular pathology has taken hold and is fast advancing in many
developed countries of the world, its introduction in Nigeria is barely one
decade old, despite perennial challenges that have been posed by its
absence either for infectious diseases or for forensic pathology in
particular. Its recent inception in the country is not surprising given the
recent growing national awareness on the proliferation of cancer in
Nigeria, and the number of deaths arising there from, consequently a
compelling need for the establishment of physical and regulatory
infrastructure for the practice of molecular pathology in the country. For
example, there is increasing interest both in the private and public sectors
to invest in cancer research and management as well as the management
of diseases such as tuberculosis and Lassa fever. These provide a new
vista for the establishment of a national network of molecular pathology
laboratories in the country for their management. This paper, therefore,
examines the current stage of development of molecular pathology in
Nigeria, the hindrances to its development, the need for balance between
its pace of development and national needs; and finally proposes a
framework for the development of a national policy on molecular
pathology, and its linkage with the international network.
Acknowledgements: Kaduna State University, Kaduna, Nigeria, for
funding.
SACRIFICING PROPER PRACTICE ON THE ALTAR OF THE
BEAUTY BUSINESS? INFORMED CONSENT IN THE FIELD OF
COSMETIC DENTISTRY
Tracey Elliott, University of Leicester, UK
[email protected]
In recent years the UK has seen a growing demand for cosmetic
interventions, including aesthetic dentistry. The public, and young people in
particular, are increasingly aware, thanks to the mass media and the
seemingly unstemmable flow of stories relating to alleged or actual celebrity
cosmetic procedures, that their bodies (including their teeth) can be
modified to align them more closely with personal notions of ‘ideal’ beauty.
Cosmetic dental procedures have therefore become increasingly accessible
and ‘normalised’. However whilst some cosmetic procedures (e.g. tooth
bleaching) may be seen as being non- or minimally invasive, others (e.g.
crowns or the provision of implants) are highly interventionist, and involve
the destruction of sound dental tissue. Within the profession, and in dental
journals, there has been much gnashing of teeth as to the appropriate
ethical stance to adopt in relation to aesthetic procedures, with some
arguing that there should be greater adherence to the ‘daughter test’
(would you do what you are proposing to do to your patient, to your
daughter?), whilst others argue that even radical treatment may be ethically
justified provided that the patient’s informed consent is obtained and the
objective of a better, whiter smile, to a satisfactory professional standard, is
achieved. This paper examines the issue of informed consent, critically
considering what is legally and ethically required of the aesthetic dentist in
relation to the provision of information about cosmetic procedures,
outcomes and tooth/implant maintenance, and assesses whether the
profession currently appears to meet these requirements.
Abstracts of Oral Presentations
ETHICAL CONSIDERATIONS IN RACIAL INCLUSION FOR
CLINICAL RESEARCH
Glenn Ellis, Strategies for Well-Being, USA
[email protected]
Clinical researchers are expected to include racial and ethnic diversity in
their study samples. The inclusion of racial and ethnic minority
participants in health research is an important step toward improving the
health of all members of our communities.
However, in actual clinical practice, how one applies this concept is not
always clear.
Minority populations have historically and consistently been underrepresented in clinical trials. As a result, important information about how
medicines work in minority populations is not always available.
Additionally, the more diverse the participant pool, the more confidence
we have of the results and their benefits for all people. For many reasons,
certain groups participate less on clinical trials than others. This applies to
researchers and investigators as well.
The difficulties that researchers experience in engaging research
participants, and potential participants experience in trusting research,
are based in historical and contemporary injustices that play out in
research, but originate in the social, political and economic context.
This presentation will explore some of the historical and cultural patterns
that continue to contribute to a lack of racial and ethnic inclusion in
clinical trials in the United States for both subjects and investigators.
Solutions will be offered on strategies, which can contribute to closing this
gap.
POWER RELATIONS IN RESEARCH ENCOUNTERS:
IMPLICATIONS FOR ETHICS IN RESEARCH
Guy Enosh, Adital Ben-Ari, University of Haifa, Israel
[email protected], [email protected]
In this presentation we examine developments in research relationships
between researchers and participants, in terms of research ethics, power
differentials, and the construction of knowledge. We explore the
evolution in perceptions of research participants, from being “used” as
“subjects”,
through
being
considered
information-providers
(“informants”), to becoming full research partners. The presentation
would encompass two dimensions of power relationships between
researchers and participants, the first focusing on power differentials in
terms of social status, and the second in terms of control over knowledge
and its production. Within this framework we claim that both content and
context of the interaction are sources of new knowledge. We will discuss
the reciprocal nature of research relations, power differentials, and
control over the production and dissemination of knowledge, as they
relate to moral stances between research partners. Furthermore, we will
examine the research relations between researcher and participants and
the ways in which the encounter between their respective worldviews
contribute to the construction of knowledge.
UNDERSTANDING THE “SOCIAL FRAGILITY”
Antonio Esposito, Università di Napoli L’Orientale, Italy
A short story around a nursery rhyme, the meeting with fragility that hold
beauty to faces, hands, stories that have found a place. The rupture of a
model marks an occasion, another space, across the border. Into the open
is the indecipherable effort and value, part of a language that does not
want to simplification.
DOING RIGHT FOR PATIENTS: A GROUNDED THEORY ON
PHYSICIANS’ UNDERSTANDING AND NEGOTIATION OF
ETHICAL DILEMMAS
1
Rhodora C. Estacio , Roberto T. Borromeo
1
University of the Philippines
2
De La Salle University, Philippines
[email protected]
2
The purpose of this qualitative study is to explore how Philippine medical
practitioners perceive and negotiate ethical dilemmas they encounter in
79
their clinical practice. The study used the grounded theory method of
Strauss and Corbin with in-depth, semi-structured interviews to
understand the lived experiences of twenty eight (28) participant
physicians whose age ranged from 27-70 years.
After open coding of transcripts of interviews, axial coding and selective
coding of emerged concepts, six distinct yet related categories were
identified namely: a.) the nature of ethical dilemmas, b.) causal conditions
triggering the dilemmas, c.) contextual conditions of the ethical
challenges, d.) intervening conditions affecting the negotiation of the
dilemmas,
e.) action/ strategies in resolving the dilemmas and f.) outcome/
consequence of the decision on these ethical challenges. Several
attributes under each of the six major categories were identified by the
study.
From the results, it can be concluded that the overarching motivation of
physicians in the negotiation of ethical dilemmas is “Doing Right for
Patients”, the core category that emerged after analysis of data. It is the
category that ties up all the other categories and can explain the six
distinct but related subsidiary categories and their attributes. Several
factors were identified as having an influence in the decision making
process of physicians; one of which is the limited impact of the ethics
courses during their medical education. Therefore, there is need for
development of new models of medical ethics education that is more
attuned to local health problems and issues as well as strategies for
horizontal and vertical integration of ethics teaching with the rest of the
medical curriculum.
DISORDERS OF CONSCIOUSNESS AND BRAIN DEATH:
MEDICAL AND ETHICAL CONSIDERATIONS
1
2
Anna Estraneo , Giuseppe De Michele
1
Salvatore Maugeri Foundation, IRCCS, Italy
2
Federico II University, Italy
Medical advances in life-sustaining treatments led physicians, patients,
and families to face major ethical challenges surrounding end-of-life
decisions. Although multimodal neuroimaging and neurophysiological
studies hold significant promise for a better understanding of the
pathophysiology of disorders of consciousness (DoC), the protocols for
diagnosis and management of patients with vegetative (VS) and minimally
conscious states (MCS) are not yet completely defined. The recent
descriptions of unexpected cortical activations in patients clinically
diagnosed as VS jeopardize our confidence in the capacity to evaluate
residual brain and cognitive functions in DoC patients and trigger serious
medical, ethical and legal debates.
Here we present a brief update on recent diagnostic, prognostic and
therapeutic advances in DoC that might provide a scientific basis to guide
physicians and patients’ families in decision making.
Also the concept of brain death owed its origin to intensive care
advances. Diagnosis of brain death is crucial for transplantation of
completely functional organs. Criteria for brain death definition are
widely used and standardized, but significant inconsistencies and
contradictions still remain and there is no worldwide accepted consensus
on the medical criteria for determining brain death. This raises essential
questions about the ethical issues involved in withdrawal of life support
and underscores the importance of clearly separating the diagnosis of
brain death and the decision to withdraw life support from the purpose of
organ transplantation.
As improvements in medicine and technology posed profound challenges
for our traditional concepts of consciousness and life, hopefully, further
scientific advances could help us in the management of these issues.
HUMAN DIGNITY AND ASSISTED REPRODUCTION:
BIOETHICAL CHALLENGES WITHIN THE NIGERIAN
CONTEXT
Michael Etim, University of Uyo, Nigeria
[email protected]
Reproduction is a fact of life and assisted human reproduction signifies all
those techniques which involve the manipulation of germ cells, as a
substitute for natural procedures, with the finality of achieving
reproduction. Most of the techniques – “intra-corporeal,” “extracorporeal” and “micro-assisted-techniques” – developed in assisted
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UNESCO Chair in Bioethics 9th World Conference
human reproduction have emerged as part of the response to the
challenges of human infertility. Infertility is a major reproductive health
problem in Nigeria, the bulk of the burden of the negative impact of
infertility is borne by women. Most techniques of assisted reproduction
are available in Nigeria. It is important to have an open bioethical
reflection in the country with regard to these techniques and their use.
There is virtually no regulation with regard to assisted reproductive
technologies in the country, the recommended prospect is that the
question of the current “legal vacuum,” needs serious attention. It is
important for us as a society to examine the question of human dignity
and assisted human reproduction. The expression “human dignity”
remains complex; however, its complexity as an over-arching principle
also gives it the profundity which is important in dealing with ethical
issues, especially those that touch upon human life, human responsibility
and human reproduction.
REGULATION OF MEDICAL EXPERIMENTS ON HUMAN
SUBJECTS: THE CASE OF ANTHRAX EXPERIMENTS IN IDF
Hedva Eyal, Israel
[email protected]
My talk will address the regulation procedures of medical experiments in
IDF by exploring the case of vaccine for the anthrax virus. The vaccine was
administered to 716 Israeli soldiers, between 1998 – 2006. The
experiment was classified. It was exposed in the media in April 2007, after
a number of ex-soldiers who participated in the experiment complained
about medical problems due to the vaccination.
Using the experiment as the case study, I will analyses the motives and
the reasons for the regulation failures which took place during the
experiments and exposes which interests were plays in this case.
Additionally, it explores the conduct of the military system and the
reaction of the public after the case was exposed, and how the exposure
of the case influenced the regulation procedures of the medical
experiments on soldiers.
Exploring the decision making system helps understand the role of the
secrecy and power in the regulatory system of the experiments on human
subjects. It also contributes to defining the boundaries of the discourse
regarding the medical experiments on soldiers. Additionally I will examine
the influence of the civilian actors on the policy of medical experiments in
the army; the experiments that till the case at hand remained concealed
from the general public.
THE USE OF PLACEBO IN CLINICAL TRIALS:
A MATTER STILL IN PROGRESS
D. Faillace, L. Paciello, A. Tuccillo, V. Graziano, P. Paternoster,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
The use of placebo in clinical trials is still a thorny problem from an ethical
and deontological point of view, and is still a controversial issue from a
regulatory point of view.
The issue was addressed for the first time in the fifth revision of the
Declaration of Helsinki (Edinburgh 2000).
It was first decided to reserve the use of placebo only in cases in which
there are no effective treatments of the disease which is being
experimented with. Later in the notes clarifying the Declaration
(Washington 2002) it was specified that the use of placebo may be
admitted for compelling methodological reasons, or limited to minor
situations with low risks of serious and irreversible damage.
Such provisions, however, were not accepted by the pharmaceutical
industry and by large part of medical experimenters who instead consider
the use of placebo without constraints absolutely necessary, and
therefore refer to less restrictive criteria (Good Clinical Practices, Fourth
Edition of the Declaration, in Sommerset West).
The WHO and the International Committee of Medical Journal Editors, the
so-called Vancouver Group, are on the opposite side.
So, there is opposing duality between those who trust in the Declaration
of Helsinki perceived as the bulwark of defence of people participating in
a trial, and those who show a strong tendency to shift towards standards
of research based on effectiveness and usefulness, with utilitarian
impulses.
The position of our country remains unchanged as that of reference to the
Declaration, since the operational as well as conceptual binding
compliance with the Declaration is reaffirmed in the last ministerial
decrees. It is not possible to resort to placebo if known effective
treatments are available or if the use of placebo implies suffering,
prolongation of disease or risk.
Nevertheless, it is the experience of all ethical committees, including the
“Carlo Romano” one, that one of the main points of never-ending
discussion within the evaluation of trial protocols is precisely the role of
placebo plays in each given trial with repeated analyses of the guarantee
margins its use allows in order to protect the interests of the health of the
patients.
Starting from those assumptions, we analyzed the trial protocols
examined by the Ethics Committee for biomedical activities “Carlo
Romano” between 2006, the year when the D.M. 12 giugno 2006 came
into force, which reiterated the narrowness of criteria in the use of
placebo, and 2012. We realized that out of a total of 1552 trials, 137
envisaged the use of placebo.
Studies which proposed the use of placebo in their experimental design
were carried out in the following branches of medicine listed in
descending order: neurology (22.9%), internal medicine (19.7%), oncology
(12.5%), urology (9.5%), endocrinology and gastroenterology (7.3%),
haematology (6.6%), la rheumatology (4.4%), dermatology (3.6%),
paediatrics (2.9%), gynaecology (1.5%) and finally nephrology, plastic
surgery, diagnostic imaging, and orthopaedics. Nine trials could not be
approved due to their unjustified use of placebo: 2 trials due to the
known efficacy of another medication; 2 trials due to its unjustified
risk/benefit ratio with the use of placebo; 3 trials due to poor ethical and
scientific features of its proposed design; 1 trial due to the non-specificity
of the characteristics of the placebo; 1 trial due to both insufficient
information to the patient on the use of placebo, and to the design of the
double-blind trial, which did not allow to evaluate the preparation and
the following administration of the medication and of the placebo.
Nowadays the ethics of placebo is one of the most difficult issues in the
authorization process of a clinical trial protocol.
One of the moral and educational tasks of Ethics Committees should be
that of encouraging innovative research and distrusting those trials which
appear to be more protective in terms of risks for the patients but that,
exactly for this same reason, contain imperfections in their designs.
This type of clinical trials is only apparently more ethical but as a matter
of fact may result in a failure as it does not provide information that is
unambiguous and useful to health authorities.
Therefore this type of clinical trial requires several different
confirmations, and at the end of the experimental procedure the
cumulative risk may be even greater than that of protocols which are
apparently more unscrupulous but are scientifically more rigorous.
RESPECT FOR CULTURAL DIVERSITY AND PLURALISM
Joel Farcoz, Aosta Valley Region Ministry of Education, Italy
The Universal Declaration on Cultural Diversity adopted in 20001 points to
a dual interdependence of human rights and cultural diversity. Each
principle is to be considered in the context of the others principles, as
appropriate and relevant in the circumstances. This complementary is a
requirement to reach harmony. Taking into account that we live in a
pluralistic society, the principles of bioethics need to be valid for all
communities of human being. Pluralism is a value, provided there is
mutual understanding which is to succeed making one’s good intentions
intelligible to all.
HUMANISING MEDICAL ETHICS: REFLECTIONS ON A
BIOETHICS OSCE IN A SOUTH AFRICAN MEDICAL SCHOOL
Robyn Fellingham, Steve Biko Centre for Bioethics, University of the
Witwatersrand, South Africa
[email protected]
In this paper I give an account of the current method of assessing the
learning of bioethics in the medical curriculum in the Faculty of Health
Sciences, University of the Witwatersrand, Johannesburg. Bioethics teaching
is largely coordinated with and integrated into subject specific blocks of
medicine. As a result the approach to assessing bioethics has been similar to
the approach taken to assessing other subjects such as pathophysiology,
Abstracts of Oral Presentations
microbiology, pharmacology and public health, normally with multiple
choice or short answer questions pertaining to a given case. This integrated
approach has merits, but the form of assessment also presents some
difficulties for the discipline of bioethics, which I discuss. Following this I
describe an experimental approach that was recently taken in the form of a
bioethics Objective Structured Clinical Examination (OSCE) including a
discussion of the simulated patient, scenario and the bioethical aspects it
aimed to assess. In addition I consider some of the perceived theoretical
strengths and weaknesses of a bioethics OSCE, addressing concepts such as
the humanities in medicine, the role of bioethics in medical education, and
narrative competence in medicine and suggest that bioethics OSCE’s may
have the capacity to reintroduce a human element to the study of medical
ethics. I also consider some practical issues that arose within the context of
this particular OSCE and conclude by suggesting ways in which the process
could be revised and incorporated into the general assessment of bioethics
in the medical curriculum.
MEDICO-LEGAL ASPECTS OF SEXUAL VIOLENCE IN THE
PENAL CODES OF THE HISTORIC STATES OF ITALY DURING
THE FIRST HALF OF THE XIX CENTURY
Alessandro Feola1, Sara Campilongo1, Elisabetta Bernardel2,
1
Bruno Della Pietra
1
Second University of Naples, Italy
2
Roma Tre University, Italy
[email protected]
The theme of violence against women is very up to date inasmuch, in May
2011, member States of the Council of Europe have agreed to sign the
Convention on preventing and combating violence against women and
domestic violence.
In Italy, the theme has been debated on several occasions and by many
institutions since the early days of Roman Empire with the promulgation
of the lex Iulia “De adulteriis coercendis”. Of particular interest, for the
number and the variety of codes, is the first half of the XIX century, before
the establishment of the Kingdom of Italy in 1861, when the country was
divided into several states such as the Kingdom of Sardinia, the Kingdom
of Lombardy-Venetia, the Duchy of Parma, Piacenza and Guastalla, the
Duchy of Modena and Reggio, the Grand Duchy of Tuscany, the Papal
States and the Kingdom of the Two Sicilies. Each one adopted its own
legal system. Analyzing the penal codes in force in the various Italian
States in the first half of the XIX century and comparing them with the
codes of the Kingdom of Italy and of the Italian Republic we can say that
are two significant key-points. First of all has been a significant evolution
of the crime, before it was considered as committed against public
decency then as crime against the person. The second point is
represented by a distinction between the crime of indecent assault and
rape present in the codes of the XIX century; nowadays these two kind of
crimes are unified into the crime of ‘sexual violence’ with a technical
evolution of the medico-legal investigation.
TOWARDS AN ETHICAL ANALYSIS OF PUBLIC HEALTH
REFORM: WHY IT MATTERS AMONG THE INDIGENOUS
COMMUNITIES IN THE PHILIPPINES
Klein R. Fernandez, Australian National University, Australia
[email protected], [email protected]
While epidemiological bases and the social determinants of health are
now mainstreamed in the health planning, policy, and program
evaluation, ethical analysis of public health reform programs in the
Philippines is rarely looked upon. Thus, this study explores the ethics of
public health reform in the Philippines by investigating on the structural
relationships between the national government and local government
units as the principal providers of health services to the indigenous
population. It also focuses its attention to the structural dynamics
between and among social actors present within the health system.
In here, the life-stories of rural health doctors are interesting points of
discourse for they occupy a strategic proximity in the whole gamut of
power relations in health service delivery. As they become more engaged
with indigenous communities, they possess an emphatic understanding
that borne out from their daily interaction on the complex determinants
of indigenous health. As active players, each of their experiences is an
interesting sounding board of ideas to which future policies and programs
81
can be derived in a manner that reflects the real health needs of the
indigenous communities. Out of their narratives, this study follows a
Spinozan style of ethical analysis, which puts emphasis on the interrelated
aspects of knowledge system, positioning of laden interests, and the
formation of conative power to achieve the desired health outcomes.
THE TRAVEL OF “GOOD DEATH”
R. Ferrara, I. Cerrone, V. Maietta, M. Paternoster, M. Niola,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
In Italy any form of euthanasia is absolutely prohibited due to the declared
prohibition of voluntary homicide for particular moral and social values,
homicide of the consenting person and instigation to and helps with suicide.
Also to Medical Deontological Code prohibits any form of euthanasia.
In other European Countries such as Switzerland, Belgium, the Netherlands
and Luxemburg there are legislations which permit those activities
extending them sometimes to foreigners too.
In Switzerland, in full compliance with article 115 of the Helvetic Criminal
Law, punishing only those who “for selfish reasons instigate someone to
commit suicide or help someone do so”, agencies and associations have
been created to assist and support both Swiss and foreign citizens in the
“sweet death” procedure.
In the last decade a considerable increase in the number of people who go
to Switzerland to commit euthanasia has been reported, thus giving rise to
the so-called phenomenon of “suicide tourism”.
A great impact has had, in Italy, the case of L.M., a well-known political
journalist, who decided to put end to his own life in Switzerland, alone, no
relative accompanying him, though he was not affected from any
untreatable physical disease and his life expectancy was not so short.
In our country and increasing spread of websites has been observed which
aim at publicizing the activity of foreign agencies that promote assistance
and accompanying to assist death.
Therefore, ethical, deontological, clinical and legal considerations are
required as to this particular form of assisted suicide, the more so since
requests for it come from vulnerable subjects whose end of life decisions
are conditioned by the experience of their disease.
ASSISTED PROCREATION AND ABORTION IN THE
COUNTRY BY MUSLIMS
Maria Anna Filosa, Italy
[email protected]
The purpose of the present discussion is to outline the international
regulatory framework of assisted procreation and of the 'termination of
pregnancy. Different cultures and different social and moral values in
which they move the various countries examined makes clear that the
rights about these treatments sometimes are difficult to recognized and
protected. Some recognized abortion only in case of danger to the
mother, while others, condemn a priori, without evaluating cases and
circumstances in which this is practiced. The Islamic countries have
conflicting guidelines. There are some that prohibit any act preparatory to
be put in place this specific treatment, while others, such as Turkey, for
example, admit that if the pregnancy is the result of incest or violence. In
short, the medical-legal is divided on one of the most debated and
controversial in recent years. What most compisce as still many countries
of the Mediterranean area have over the years modernized their
conceptions of life, so as to include this also the one that apparently could
occur once and its negation, but that is not another, in some cases, a
respect for those about to be born, and especially for women, is no longer
considered as a mere procreation or incubator, but identity as free to
make their choices freely and knowingly.
WHAT WENT WRONG? THE FULL DISCLOSURE POLICY TO
THE PATIENT
Vittorio Fineschi, University of Foggia, Italy
[email protected]
The aim of this presentation is to investigate the behavior of
odontologists in cases when medical errors occur. Again, evaluating the
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UNESCO Chair in Bioethics 9th World Conference
feasibility of adopting a full disclosure policy and the extent to which such
a policy can help reduce administration and legal costs.
When an error occurs it has a physically, emotionally and economically
traumatizing effect upon the patient. Patients suffer a range of negative
emotions including: sadness, anxiety and depression. In addition, patients
are angered by the fact that the error was predictable and could have
been prevented and they fear that further errors or adverse events might
occur. In any case, documented research shows that the patients and
their families expect those responsible to acknowledge their error and
give a reason for the adverse event. It is well known that iatrogenic
injuries are accompanied by a high degree of tension in the patientodontologists relationship; patients want information about errors which
can occur during treatment; moreover, it is their right to receive such
information. At the same time, the odontologist staff should consider it
their moral and ethical duty to acknowledge errors and discuss them with
the patient and family.
Much more studies have to be carried out to be able to comprehend the
ethical and economic impact of a full error disclosure policy.
IMMIGRANTS! HOW ITALIAN EMERGENCY HEALTH
WORKERS PERCEIVE THE “OTHER” PATIENTS
Paola Antonella Fiore, Mariarosaria Aromatario, Edoardo Bottoni,
Simone Cappelletti, Costantino Ciallella, Sapienza University of Rome, Italy
[email protected]
“Millions of people are caught up in the phenomenon of migration, but
they are not statistics! They are men and women, children, young and
elderly people, who are searching for somewhere to live in peace”. (Pope
Emeritus Benedict XVI, during the World Day of Migrants and Refugees
summarized the condition of many around the world with this statement.
The same concept has been stressed in the annual Statistical Dossier on
Immigration report for 2012, from Caritas Internationalis, in which the
motto chosen was: “They are not numbers”.
In Italy between 1990 (when the geographical reservation was
withdrawn) and 2011, there were 326,000 asylum applications (archives
of the Ministry of the Interior); it is estimated that the 8.2 percent of
Italy's population is composed by immigrants. It is also estimated that in
the 2065 the percentage of immigrants in Italy will be near to the 22.9
percent.
The Aim of the Authors is to evaluate, through a questionnaire, the
different approaches of emergency health workers of an Italian hospital
between Italian and non-Italian patients and their eventual different
management.
The questionnaire was elaborated with the collaboration of specialized
and properly trained professionals, it is based on the USA PoRS
(Perceptions of racism score), adapted on the Italian cultural contest and
integrated with other tests such as the Empathy Quotient, the Implicit
Association Test and others. The data were analyzed and processed
showing interesting results that will be presented in the paper.
THE CONFLICT "ABOUT THE RIGHT THING TO DO":
BIOETHICAL IMPLICATIONS IN SPEECH THERAPY
A.L. Fogliato, F. Balbo Mossetto, Italian Federation Speech Therapists
Piedmont, Italy
[email protected]
In the decisions that Speech Therapist is required to take in various
situations of professional life there are always two components closely
interlinked, although conceptually distinct: mastering scientific and
technical knowledge, knowing what to do and how to do it; and reference
to values. And since each of us must be aware of all these components.
Ethical dilemmas in health care are common, with the consequence that
speech therapist, in his daily professional act.
The project work developed is intended to:
•
•
verify the state of art concerning knowledge and approaches of the
speech therapist to some aspects of clinical ethics and bioethics;
investigate actual training needs inherent in bioethics.
The idea was to conduct a structured interview using an online
questionnaire; it is aimed at speech therapists, graduates, beginners and
experts, which operate in Piedmont.
From a first analysis, it is evident that speech therapists must face many
practical experiences involving ethical dilemmas and the whole structure
of work: professional relationships, institutional roles, personal/
professional identity, relationships with the patient/care-givers.
This implies that basic and post-basic training should be not only
technical, but also organizational and relational.
In fact, in the present society, it is once again necessary to recognize,
uphold and support the right of the disabled person to rehabilitation,
remembering that each individual affected by disorders of
communication has a history, values and ideas about what is important
for himself.
DISORDERS OF CONSCIOUSNESS AND AWARENESS IN
SEVERE ACQUIRED BRAIN INJURY: BIOETHICS COMPARE
WITH SPEECH THERAPY
1
2
3
4
A.L. Fogliato , F. Balbo Mossetto , Sara Vesco , Carla Corbella , M.Beatrici
1
Città della Salute e della Scienza di Torino, C.T.O./ M. Adelaide, Italy
2
Local Health ASL TO2, Italy
3
Hospital “Martini”, ASLTO1, Italy
4
Theological Faculty of Northern Italy, Italy
[email protected]
1
The subject of consciousness has fascinated human beings at least since
the period of the early Greek philosophers. In recent years an increase of
interest concerning the altered state of consciousness was observed.
Disorders of consciousness (DOC) raise profound scientific, clinical,
ethical, and philosophical questions.
Patients in minimally conscious state, requiring individualized
communication systems and targeted therapies performed by Speech and
Language Therapists, raise numerous bioethic questions and deontology
dilemmas for healthcare workers.
A brief review of some current views of consciousness and awareness is
provided.
Will be try a brief review of some current views regarding the concepts of
consciousness and awareness. In addition, it will be analyzed what are the
main disorders of consciousness and awareness found in patients with
Acquired Brain Injury, as well as areas in which the Speech and Language
Pathology (SLP) are involved.
It will be tried to analyze references in rules, bibliography and ministries,
national and international, ethical and professional standards the speech
therapist has to comply in their professional action.
ETHICS & SURGICAL CARE IN MID-TERM DEVELOPMENT
PROGRAMS IN LOW-INCOME COUNTRIES:
A PARADIGM SHIFT – OUR EXPERIENCE IN SIERRA LEONE
Marco Foletti, Paolo Narcisi, Rainbow for Africa, Italy
[email protected]
Injuries in low-income countries still account for a considerable burden of
mortality and morbidity, and preventable long term disabilities due to the
unmet need for surgical trauma care are ethically unacceptable. However,
several ethical issues may arise when designing mid-term development
programs addressing this problem: equitable access to surgical care,
delivery of safe surgery according to the reference standards and ensuring
long-term follow-up. On the other hand, interventions have to be
sustainable in order to produce long-term results.
The authors will present a mid-term development program implemented
at hospital level in Sierra Leone (Bombali district), co-funded by the Italian
Ministry of Foreign Affairs and being implemented by three
NGOs/Nonprofit organizations, where the aforementioned ethical issues
where addressed by shifting the focus from delivery of surgical care to
training of the local healthcare personnel.
Over the past 18 months, after having renewed the hospital
infrastructure, local healthcare personnel was trained in emergency
medical trauma care, primary surgery for trauma and rehabilitation.
The authors will then discuss the ethical issues and the proposed
solutions arisen during the ongoing training program, and particularly
those related to the selection of the training beneficiaries, development
of the training curriculum itself and ensuring safe surgery is autonomously
delivered by local personnel at the end of the program.
Abstracts of Oral Presentations
IS THERE AUTONOMY OF THE WILL FOR MENTALLY ILL
PATIENTS? WHAT ARE THE ROLES FOR PATIENTS, FAMILY,
PHYSICIANS AND LEGAL AUTHORITIES? BRAZILIAN
SOLUTIONS AND PERSPECTIVES TOWARDS THE SUBJECT
ARE OBJECT OF THIS STUDY
Washington Fonseca, Fonseca & Motta Ferreira Sociedade de Advogados,
Brazil
[email protected];
[email protected]
This study aims to address the ethical and legal aspects involved in the
treatment of mentally ill and vulnerable patients. Is the autonomy of their
will applicable? Can it be respected? This study intends to discuss how
authorities, families and health teams deal with these issues. Also, how
the perception of reality can affect the patient’s will and decisions. How
the Brazilian society handle risk-taking decisions?
Ethical and legal discussions in this regard relate to human dignity –
dignity of the patient. It is ethical/ legal to provide involuntary treatment
or in opposing manifestation of his/her will?
An important question that relate to human dignity in such cases is:
“Where is the legitimate border line of the State, family and health teams
in order to interfere or allow the patient to decide what is the best
treatment for him/herself?”
This presentation shall allow students, law and health professionals to
understand how Brazil handles these problems and limits imposed by the
Brazilian Constitution and Civil Rights.
How can these Rights of patients who find themselves in vulnerable
conditions be protected? What actions can be taken when there is no
discernment or limited discernment? What standards and criteria are
used for these vulnerable patients?
PUBLIC ACCOUNTABILITY AND THE ETHICS OF HEALTH
CARE REFORM DECISION-MAKING IN SWITZERLAND
Carina Fourie, Verina Wild, University of Zurich, Switzerland
[email protected]
Switzerland is in the process of implementing health care reforms, which
include applying a prospective payment system for the reimbursement of
hospitals based on a Diagnosis Related Groups (DRGs) classification
system. While research is being conducted on the ethical implications of
the implementation of DRGs, such as its effects on access to health care,
thus far little attention has been paid to the ethics of the decision-making
process underlying the reform. When it comes to the ethics of health care
reform, however, it is essential to consider, for example, how and in what
way the public is consulted in its implementation, monitoring and
evaluation. This paper will contribute to filling the gap in current ethical
research by evaluating the ethics of the decision-making process related
to the Swiss health care reform using Daniels et al.’s (1996) benchmark of
public accountability. More specifically, we will consider the relevance of
two criteria of the benchmark for evaluating the reform: (1) the
availability of explicit, public, and detailed procedures for evaluating
health care plans, and (2) explicit and democratic procedures for
allocation decisions. (‘accountability for reasonableness’).
On the basis of this evaluation, recommendations will be made about
how health care reform could be implemented in Switzerland so as to
comply with fairness. The analysis and application will also provide critical
feedback for developing the benchmark further. We will argue that (1)
accountability for reasonableness should not be limited to rationing
decisions, (2) the benchmark should be supplemented with additional
criteria and (3) the normative assumptions underlying the benchmark
need to be stipulated. For the Swiss context, the last point indicates that
the relationship between direct democracy and the normative
assumptions underlying public accountability is likely to be an essential
part of achieving fairness in health care reform.
83
THE VALUE OF THE GUIDELINES AND JURIDICAL
INTERPRETATION TO PROTECT THE PATIENT
Paola Frati, University of Rome “La Sapienza”, Italy
[email protected]
The gradual spread, in recent years, of recommendations, guidelines and
protocols, while bearing witness to the need of the scientific community to
order medical knowledge in cognitive systems aimed to raising standards of
quality, it has in the past reassured the judiciary who, while appreciating the
undeniable value, appears to be critical with respect to their prevalence on
the right to health of the individual patient.
The Supreme Court in its judgment emphasizes the central role of evidencebased medicine, guidelines and reliable therapeutic practices, if supported
by the consensus of the scientific community. Supreme Court remember, in
fact, as "the guidelines constitute scientific and technological knowledge
encoded, metabolized, made available in a condensed form, so that it can
serve as a useful guide to guide smoothly, efficiently and appropriate
therapeutic decisions. You try to objectify, standardize the assessments and
determinations, and rescue them from the subjectivity of the therapist. The
advantages of this systematized work of orientation as much is known
obvious. "
Both the consultant that the judge cannot use the guidelines as a tool of
preconceived ontological reliability. Is essential to evaluate the source of
origin, the characteristics of the individual or the community that produced
them, its institutional form, the degree of independence from economic
interests conditioning. Interestingly, at this point, ask yourself some
questions of substance, recently invoked in an ad hoc written on the
guidelines, questions concerning the 'Statute of guidelines covering law,
including in relation to the process of formation of the same, to their variety
or origin'. Well, recent studies give us an inkling, perhaps a little suspect,
that the recommendations proposed by the guidelines are often based on
expert opinion and characterized by low levels of evidence, making them
subject to bias and partiality scientific guidance. Also, how to evaluate the
frequent conflicts of interest among the authors of the guidelines that may
be a problem, as they may affect the neutrality of recommendations? The
sad conclusion is that most of the guidelines lack transparency as to their
development of writing and the evidence supporting the recommendations
are often of very fine scientific consistency, by deriving greater transparency
regarding the construction method of the guidelines.
The guidelines are double-edged swords? It would seem so, and after the
introduction of the law 189/2012, we have to think about the guidelines as
instruments of legal work and not just as a reference for physicians and
patients.
CONDITIONS AND LIMITS OF PROTECTIVE MEASURES
INVOLVING CHILD'S REMOVAL FROM PRIMARY
ATTACHMENT FIGURES: PSYCHOLOGICAL AND ETHICAL
ASPECTS
Tiziana Frau, Sabrina Giorcelli, and coll., Italy
[email protected]
The Weltanschauung in the era of globalization, characterized by the
domination of technological power and streamlining of processes, proper
to the modernity (Weber, 1922), has increased the predominance of
technical code and functions in spite of meaning and moral-ethical
reflection (Sandel, 2008).
The removal of the real caused by self-referential technical systems, often
leads to the underestimation of the mid-long term risk (Magatti, 2012).
The arguments in support of preventive actions or analysis of mid-long
term risks, tend to be weak due to the predominance of short-term
considerations. As a result, this underestimation of the risk exposes the
social and health system to constant unexpected emergencies.
In this general framework, the concept of "life" itself is resolved only in
the biological paradigm that cannot contain the meaning of life as
existence. The human being within the biological framework, reduced to
the status of mere body, is deprived of vital relations with its history and
its memory (Foucault, 1998).
In this sense, the decision about the insertion of a child in areas different
than those in which he has built its history, impacts vital aspects and has
bioethical relevance. Such decisions severe vital links that are essential
part of the subject, and thus require an assessment that takes into
account child’s attachment.
84
UNESCO Chair in Bioethics 9th World Conference
The report aims to fully explore the psychological and ethical aspects of
this important subject.
ARE THERE EVIDENCES FOR HARM IN TUBE FEEDING IN
PATIENTS WITH ADVANCED DEMENTIA?
Reuven Friedmann, Shaare Zedek Medical Center, Israel
[email protected]
The question whether to sustain life of a patient with advanced dementia
by tube feeding is a serious ethical one, and as long as there are no real
evidences that can clearly show harm versus benefit by the physical data
obtained by controlled studies, the judgment should be only by ethical
arguments.
The Wisely Workgroup of the American Geriatric Society suggested not
recommending tube feeding for a patient with advanced dementia. They
recommended engaging individuals and caregivers in discussions which
examine the evidence base of the procedure. But their recommendation
rely on non-controlled studies, which seems to target their results
towards the desired end point; to withhold tube feeding in the patient
with advanced dementia, which can be accepted when discussed on
ethical basis only.
Most of the studies on which these recommendations rely on ignore
some crucial points:
The methods of tube feeding defer when comparing nasogastric tube with
percutaneous endoscopic gastrostomy (PEG) tube by many means (e.g.
aspiration, restrain, metabolic improvement), but most of the studies
cited did not make this distinction, and therefore their results show bad
outcomes.
At least two controlled studies showed significant better outcome for
patients in whom the PEG was inserted while otherwise stable medically,
compared with those whose PEG insertion was done during a
hospitalization due to acute illness. The PEG insertion for the patients in
the study which showed worse result in pressure sores healing or
prevention, were all hospitalized for an acute disease at that time. There
are no details about this point in the control hand fed group.
Were the patients with tube or hand feeding in the deferent studies really
comparable? Why the patients with PEG did had tube feeding, and why
were the patients with hand feeding fed orally? Not because they defer in
their feasibility in oral feeding? The survival rate of 79.9% in 180 days in
the orally fed group obviously shows that in this group oral feeding is
feasible!!!
It is suggested to leave the debate about tube feeding in the patient with
advanced dementia to ethical debate only, till there will be real controlled
studies.
LIFELONG LEARNING AS AN EMERGING RIGHT
Laris Gaiser, EMUNI (EuroMed University), Italy
The "Lifelong Learning" Centre of Naples L’Orientale University and
EMUNI (Euromediterranean University) have promoted the Manifesto for
Lifelong Learning. The Manifesto for lifelong Learning as en Emerging
Right in Euromed area, was drawn up during two international meetings
and attended by scholars and representatives of the following
institutions: Institute for Lifelong Learning of the UNESCO (UIL) EMUNI,
Cedefop, EUCEN, ANQ Portuguese, Sectorial Training Center for Tertiary
Skills of Sousse (Tunisia), Ministry of Higher Education (Egypt), Ministry of
National Education (Morocco), the University of Hacettepe (Turkey),
Anadolu (Turkey), Nancy 2 (France), Tetouan (Morocco), Lisbon
(Portugal), Arab University of Beirut (Lebanon), University of Naples
"L'Orientale" (Italy)
PSYCHIATRIC TREATMENT CONSENT AND THE SUPPORT
TRUSTEE: FROM A NEW FORM OF GUARDIANSHIP TO THE
“CURA PERSONAE”
Diana Galletta, University Medical School “Federico II” Napoli, Italy
[email protected]
The acquisition of the treatment consent, based upon correct information
of the patient, is a necessary condition of every medical performance.
Psychiatric treatments, as well, are not free from such condition, but they
may present difficulties in the concrete application of the regulations.
There are several grey areas in which the consent is incomplete or
uncertain. Therefore, its reliability and its fluctuations should be observed
in time using standardized tools, in order to avoid medical and legal
consequences both for the psychiatrist and the patient.
This sort of problem was faced by the Oviedo Convention (1997) section
dealing with the “Protection of persons not able to consent”.
In Italy the Support Trustee law (6/04) has shifted the keystone of the
guardianship from the economic affairs, like the judicial interdiction
agencies used to do, to the protection of persons (partially or completely
devoid of self-government), changing the traditional approach to the
guardianship of the mentally incompetent.
The Support Trustee in the psychiatric field as a therapeutic instrument is
useful in those situations when the guardianship is oriented towards the
“cura personae”, primarily in case of poor treatment compliance.
Moreover, in some cases (e.g. psychotic patients) the Support Trustee
acts as a guarantee of the treatment continuity.
The pliability of this new tool is due to its potential adaptability to the
protection recipient’s specific needs as well as its flexibility to be applied
in case of partial or temporary incapability, even for a short period of
time.
The authors will discuss the potential aspects of this new form of legal
protection.
FREE AND INFORMED CONSENT TO MEDICAL TREATMENT
AND VULNERABLE PERSONS
Nicole Gallus, Université Libre de Bruxelles; Bioethics Advisory Committee,
Belgium
[email protected], [email protected]
The Belgian Law of 22 August 2002 on the Rights of the Patient introduces
the requirement of the patient’s free and informed consent for any and
all medical treatment, its corollary being the right to refuse a treatment.
For vulnerable persons, incapacitated in fact or in right, the Law provides
for the patient’s representation by a legal representative, a contractual
proxy or the “natural protectors” by default, being the persons closest to
the patient.
This system, while indeed consistent with international treaties, is based
on a mechanism of representation not readily compatible with (i) the
personal and intimate aspects of the medical intervention, (ii) the
compromising of physical integrity and (iii) the right to privacy.
To address this difficulty, the Belgian legislator has reformed the rights of
vulnerable persons in accordance with the UN Convention on the Rights
of Persons with Disabilities of 13 December 2006, by focusing on the
ethical principles of subsidiarity and proportionality of any and all
interference with the personal rights of vulnerable persons.
To achieve this aim, the reform limits the scope of the representation in
medical law and favours the extrajudicial protection considered as least
prejudicial to personal freedom and dignity. The reform also aims at
safeguarding the autonomy of vulnerable persons to the greatest extent
possible, while preserving their right to express a personal will whenever
a lucid interval or an evolution of their physical or mental health allows
for it.
The Law thus aims at increasing the role of the vulnerable person in the
decision-making process in matters which are of concern to her/him,
depending on her/his possibilities.
At the same time, a “trustworthy person” will assist the vulnerable person
in expressing her/his will, or express this person’s presumed opinion.
EVALUATION AND ACCREDITATION OF BIOETHICS
EDUCATION IN SRILANKA
Harischandra Gambheera, National Institute of Mental Health Colombo,
Sri Lanka
[email protected]
Majority of Sri Lankan People do not participate in decision making by
medical professionals regarding the management of patients. Sri Lankans
are of the view that decisions are of the best interest of the patient. As in
any other developing country the health literacy and the knowledge on
bioethics amongst its people are poor and they allow physicians to decide
what is best for them. There is no public discussion on bioethics what so
ever in Sri Lanka.
Abstracts of Oral Presentations
Knowledge on bioethics amongst health professionals are also not up to
the standards and up to date. Teaching bioethics is limited to a few
lectures conducted by departments of Forensic Medicine in most medical
schools in Sri Lanka. However there is no evaluation process at any stage
in the carrier. There is no general discussion on bioethics other than a few
professional organizations discussing ad hoc.
Interest in teaching bioethics and professionalism and evaluation appears
to be increasing in the recent past in medical schools and Postgraduate
Institute of Medicine. There is a discussion on improving teaching
methods and modalities of evaluation. The UNESCO unit established in
National Institute of Mental Health is contributing to this endeavour by
conducting lectures, workshops and symposia on bioethics in various fora
in Sri Lanka.
CONSCIOUSNESS: COGNITIVE NEUROSCIENCES AND THE
PROBLEM BRAIN/MIND
Massimo Gandolfini, Ospedale Poliambulanza, Italy
[email protected]
The theme of the “consciousness” has always attracted man’s speculative
endeavour. Philosophy, the historical owner of this subject, today seems
weak and inadequate in view of the advances made in the so called
“neurosciences” which – with their weighty technological support
(neuroimaging and electrophysiological techniques) propose to
demonstrate how the consciousness is strictly the product of brain, just as
muscles generate force. They are defined “neural correlates” of
consciousness, that are the basis and biological mechanisms which
produce consciousness, neural networks and electrical and chemical
neurotransmitters.
On a functional level, today consciousness is defined as emerging from a
complex system of “integrated and stratified information” and the
addition of important achievements explains the “how” of the
development of “conscious awareness”. However, to understand “how”
does not imply directly to understand “why”.
The sense organs, the proprioceptive and motor systems, the selfreflective system are certainly necessary structures for conscious
elaboration, but the extreme complexity, coupled with the absolute
individuality, are not sufficient to explain the “conscious phenomena”.
The neural correlates appear like a substance imprinted and lived
experience, phenomena which happen first and shape the elaborate
conscious.
It means, therefore, the reversal of the system of reading consciousness:
the co-related biological neurons are not the starting point, rather than
the life experience in all its phenomenal value.
Here is begun the “virtuous” understanding, in strict collaboration with
knowledge, different and complementary disciplines, which – without
invading others fields unnecessarily – unit each element of knowledge
which allows an “understanding” of consciousness, “differences which
make the difference” between man and all other living things.
A rigid, mechanistic model of the relationship between
brain/consciousness seems inadequate, poor and weak in the light of
neuro-scientific progress, leaving open ample space in man’s knowledge
and in his behaviour, which can’t be reasonably reduced to anatomical,
chemical or electrical “correlations”.
THE MORAL CHALLENGES OF PREDICTIVE GENETIC
INFORMATION
Gösta Gantner, University of Heidelberg (EURAT-Project), Germany
[email protected]
The establishment of “Whole Genome Sequencing” or “Exome
Sequencing” for diagnostic purposes in the health care system will
produce an increasing number of individual health related information.
But most of the expectable findings are predictive. The predictive
potential of certain genetic information can yield a new type of patient
labeled as the healthy ill. Concerning the fact that every person is an “ill
health”, such findings of genetic predisposition “create a new class of
‘patients’ who are coming to be referred to as the asymptomatic or
healthy ill: people who have no symptoms, but are predicted to develop
1
them at some undefined time in the future.” But is such an
asymptomatic person a patient in need of help?
85
By genome sequencing a large number of risk information related to
health or genetic carrier status could arise. Acknowledging oneself as a
person who will be possibly sick or as someone who eventually will beget
a sick child determines self-conception and relations to others. As
predictive genetic information can yield a new type of patient, it yields
2
also a new type of responsibility, named genetic responsibility . Such
responsibility depends on the personal genetic information and can cause
the care for oneself, for family members, for possible offspring, and for
future generations. Genetic responsibility challenges autonomous
decision making in the Informed Consent procedure and signifies the
relevance of the right to know and the right not to know.
In my talk I will show these moral challenges of predictive genetic
information by discussing the concept of “genetic responsibility”. I will
focus on the clinical situation, genetic counseling and the possibility to
create procedures of Informed Consent which includes also family
members.
PRINCIPLES OF RESPONSIBILITY AND PRECAUTIONARY IN
THE USE OF ANTIBIOTICS AND ANABOLIC IN CATTLE:
A COLOMBIAN EXPERIENCE
Gina Lorena García, Universidad de los Llanos, Colombia
[email protected], [email protected]
This paper is based on part of her magister dissertation for Universidad El
Bosque, Colombia.
The use of antibiotics or steroids has been a practice commonly used by
farmers in Colombia to get more out of production and profitability in less
time. Among the most used are: Oxytetracycline as an antibiotic and as an
anabolic Boldenone Uldecilinato.
These products, according to national law, must be given by veterinary
prescription; however, in practice most of the traders sell these products
without veterinary prescription. Although antibiotics and anabolic have a
specific withdrawal time (time between the date of withdrawal of the
drug in the animal and the date offered food of bovine origin for human
food market), sellers and farmers do not you know, doing that at the time
of sacrifice animals have high levels of these products in their flesh, which
represents a high risk to animal and human health.
In this case, we need to invoke the precautionary principle and
responsibility. The responsibility principle in the sale of drugs by
prescription veterinary appropriate withdrawal times and ethic of
responsibility extended to animals. The Precautionary principle, to restrict
the use of antibiotics or steroids in animals destined for human
consumption, for the consequences that may come before the high
consumption of these food products of bovine origin, such as bacterial
resistance and hormonal changes.
Similarly, these principles of responsibility and caution should be
extended to the use of animals for food production, taking into account
animal welfare. Bioethics invites us to reflect on issues such as animal
rights and welfare, taking into account the animal as a living being with
rights, by reflection off if there is need to increase food production or
livestock at all costs if must assume a responsible position in front of the
animal welfare and caution against the use of these drugs for human and
animal health.
AN INTRODUCTION TO ANIMAL RESEARCH ETHICS
Samual A. Garner, HJF-DAIDS, Henry M. Jackson Foundation for the
Advancement of Military Medicine, USA
[email protected]
Since the rise of the modern animal ethics movement four decades ago,
the philosophical literature about our moral obligations to animals and
the ethics of animal research has reached an unprecedented level of
sophistication; this is accompanied by an unprecedented level of social
concern and advocacy about laboratory animals. However, productive
discussion about the use of animals in research for human benefit in both
the bioethics and scientific community is rare. There is a wide spectrum of
views, ranging from very permissive to complete abolition of animal
research, as well as a range of more moderate views. After a brief
overview of the kinds of harms to animals in research (e.g., physical,
psychological, and social harms, death, confinement etc.), this
presentation will examine how justification of these harms is considered
and will include a range of views from least permissive to very permissive.
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UNESCO Chair in Bioethics 9th World Conference
Key questions include: How valuable are non-human animal lives (what is
their moral status?)? What constitutes a good justification for taking
animals’ lives or causing them harm? Do most biomedical experiments
provide a strong enough justification for the use of animals? Should there
be limits on the amount of harm we can cause animals, and, if so, what
should these limits entail? The goal of this presentation is not to advocate
for a specific position, but to lay out the key normative issues and to
foster productive discussion.
DEFINING AN INTERDISCIPLINARY RESEARCH
METHODOLOGY LINKING LEGAL, NORMATIVE AND
EMPIRICAL ETHICS
Éloïse Gennet, University of Basel, Switzerland
[email protected]
As bioethics concerns various scientific disciplines and stakeholders, it
appears to be a great challenge for a researcher to define an
interdisciplinary research methodology which would allow the exhaustive
study of a topic and the providing of knowledge for regulators.
Several distinctions as to levels and disciplines can be made: bioethics law
and jurisprudence (axiomatic level), normative ethics (axiological level),
and empirical ethics (empirical level). Linking these categories is
challenging as the axiological level includes the concept of moral. In fact,
the latter is theoretically incompatible with empirical research (Hume’s
fundamental distinction between the “is” and the “ought” – the
naturalistic fallacy), as well as incompatible with the fundamental
objective of the law (social organization rather than promoting the “good”
against the “bad”).
The theoretical literature on empirical and normative ethics, or on the
question of an empirical research methodology in law is plentiful. Yet a
study taking into account all these theories and trying to articulate them
in order to come up with a concrete interdisciplinary research
methodology does not seem to exist. This exactly is the aim of my
contribution, which forms the methodological background of my PhD
research project on European fundamental rights within biomedical
research – more precisely, on the development of an ethical concept
(combined with the medical and legal ones): vulnerability. Indeed, based
on a strong theoretical background (positivism, Ross’ legal realism, legal
pluralism, principlism, Rawls’ Wide Reflective Equilibrium, Pragmatic
hermeneutics…), I will define a methodology which could serve as a tool
for every research on a bioethics related topic. In the end, this
interdisciplinary research methodology could helpfully contribute to
regulating more efficiently.
HOMOPHOBIA AND CRIMINAL LAW
Gianluca Gentile, University Suor Orsola Benincasa – Napoli, Italy
[email protected]
Homophobia can be defined «as an irrational fear of and aversion to
homosexuality and to lesbian, gay, bisexual and transgender (LGBT)
people based on prejudice and similar to racism, xenophobia, antisemitism and sexism» (European Parliament resolution on homophobia in
Europe, 18 january 2006). Discrimination and hate against LGTB people
are not only a matter of individual idiosyncrasy, but are also embedded in
the structures of some law and cultural systems. Thus, there is a «Statesponsored homophobia», as shown by those 78 States (roughly 40% of
UN members) which criminalize same sex sexual acts between consulting
adults. Less obvious but still worthy of attention is a «Judge-sponsored
homophobia», by which I mean the bias in certain areas of judicial
decision making (e.g. the criminal defense of "homosexual panic", which
could be used to excuse violence toward gays). Conversely criminal law
can be used as a tool to fight homophobia, as it happens in those
countries where discrimination against LGTB people is a crime or is
considered an aggravating circumstance. Therefore the aim of the paper
is to investigate how culture influences laws (State/Judge- sponsored
homophobia), and at the same time how laws can change culture (Statesponsored anti-homophobia).
MEDICATION ABORTION AND CONSCIENTIOUS
OBJECTION
M. Giammaria, G. Ciancolini, E. Marinelli, S. Zaami, Italy
[email protected]
Medication abortion (also commonly referred to as medical abortion)
consists in interrupting pregnancy using specific drugs. It’s an important
alternative to the surgical abortion, the only one used in Italy until a few
years ago, that involves performing surgical evacuation of the contents of
the uterus under general anesthesia, usually after the seventh week of
pregnancy.
Although there are several drugs suitable for the purpose, used alone or
in combination, the gold standard of medical abortion involves the
administration of mifepristone (RU486) followed by a prostaglandin,
usually misoprostol.
The introduction of RU486 has recently opened new scenarios, especially
about conscientious objection of health workers: in fact, the use of
medical methods of abortion, such as combination regimens of
mifepristone and misoprostol, requires the back-up of vacuum aspiration,
in case of failed or incomplete abortion, because these drugs are not
directly feticidal. Some health professionals, according to conscientious
objection, refuse to assist in such procedures.
The paper analyzes, therefore, legal and ethical aspects of the protocol
RU486, also in the light of a recent Italian sentence (Corte di Cassazione,
sez. VI penale 02.04.2013 n. 14979), confirming a conviction for omission
of official acts, against a doctor who had refused to lend assistance to a
patient hospitalized for medical abortion.
SHARING OPINION AND PARTICIPATIVE RESEARCH: FROM
PEOPLE EXPECTATIONS TO INDEPENDENT INFORMATION
IN ORGAN DONATION EITHER IN HOSPITAL THAN IN
TERRITORIAL SERVICES
3
2
1
E. Giancotti , G. Mancini , F. Rubba
1
Federico II University Hospital, Italy
2
G. d’Annunzio University, Italy
3
Napoli 1 Centro, Transplantation & Procurement Coordination Area, Italy
[email protected]
Advances in the sharing of best practices in the donation community have
contributed greatly over the last 5 years. Broader sharing of updated
guidelines and communication campaign with improvements in deceased
donor management have increased opportunities for organ donation.
However there are still many limitations in access to transplantation
across the globe and increase in oppositions. In order to obtain insight
into opposition attitude toward donation we intended to analyze
community imagination and expectation toward donation arguments.
We use participative methodology in order to obtain the core of
informative needs concerning donation.
We choose to utilize a simple modeling of “open question” and required
answers by using e-mail. E-mail was sent either to health concerned
people either differently concerned ones. In the e-mail we simply asked
age, sex and whatever would be informative needs.
We choose a sample of 300 people clustered from general population
Search has been conducted among different social and age conditions:
Student, Medical doctors, youth and aged people, housekeepers, priests
Evidence were assed following semantic criteria in 30 days
Prevalent informative attitudes (ethical concern, organisational
determinants, normative topics) and area of interest were assessed.
We found an almost total adherence of respondent (97% of adherence)
5 prevalent area of interest focused on prevalent questions:
• What organs may be donated
• Is the donor dead
• What is religions stand point
• When corneal donation may be possible
Our research demonstrated how simple models of participative research
can obtain organisational handily tools. The operational next step has
been to utilize the results in order to create an informative text, question
based.
Abstracts of Oral Presentations
IN SEARCH OF A BALANCE BETWEEN TECHNOLOGY AND
HUMANIZATION IN PALLIATIVE CARE
Anna Giardini, Italy
[email protected]
In Palliative Care the main aims are preserving patients dignity, by
providing pain and symptom relief, spiritual and psychosocial support and
sustaining their families in all the illness progression phases that lead to
end of life. In these moments both patients and caregivers are confused
and scared. Their desire is to prolong life but reality imposes to preserve
from futile treatments and distress.
The amazing technological evolution in all health care contexts may
increase the patients’ and families’ confusion between possibilities and
aggressive treatment, between what is possible to do and what is best to
do, between the hope for a good survival even if brief or for a prolonged
survival which may become a prolonged agony only. Each patient in
palliative care must be considered as unique; there is no correct answer
to all the issues that end-of life raises. The palliative care team should
tailor for each single individual a balanced shared decision between
technology and humanization, having always in mind that dignity must be
the center of the intervention. We should search for a new ethical
hierarchy where technology must be instrumental to humanization, the
first proposes but it is the latter that gives the direction.
A MOTIVATIONAL INTERVENTION TO IMPROVE
PERSONAL AND PROFESSIONAL WELL-BEING OF NURSES:
A MIXED-METHODS STUDY
1
2
2
Andrea Giordano , Anna Castaldo , Miriam Magri , Claudio Cavalieri
3
4
4
5
d'Oro , Donatella Camerino , Paul Conway , Talia Melo Ferrari , Gaetano
5
5
2
de Angelis , Mariangela Corbo , Giovanni Muttillo
1
Foundation IRCCS Neurological Institute C. Besta, Italy
2
Milan Nursing Council (Collegio IPASVI), Italy
3
International virtHuman©
4
University of Milan, Italy
5
San Raffaele Hospital, Italy
[email protected]
Objective: To evaluate the impact of a motivational program on personal
and professional well-being of nurses, and to explore the experience of
the participants in order to better understand the effectiveness of the
intervention.
Methods: Between January-June 2011, 102 nurses participated to a
motivational program (virtHuman©). This program was based on a
combination of different educational techniques, and consists of a twoday session (T0), a three-week interval, and other two-day session (T1).
One educator held the program with the aim to increase self-competence
in participants’ private and work-life. Participants completed the selfreported OSME (Organizational Stress Management Evaluation)
questionnaire at T0 and T1. A qualitative synthesis of the program was
also performed using content analysis. Data were collected from work
groups held during the program and divided into the following domains:
intention to change the current behavior, and barriers/facilitators to such
changes.
Results: One-hundred and two nurses successfully participated to the
program. Mean age was 43 (7.5) years, most were women (89%) and have
college education (95%). Participants demonstrated significant
improvements both for OSME personal well-being (mean change 3.9,
[7.7]; p<0.001), and for OSME professional well-being (mean change 3.4,
[7.4]; p<0.001) subscale scores. Qualitative findings showed that the
program was appreciated, increasing participants’ awareness of different
communication strategies. Moreover, participants identified several
aspects (e.g. healthy egoism, autonomy, professional acknowledgment)
that could facilitate positive behaviors either in private or work-life.
Conclusions: The motivational program was well-accepted by nurses, and
results emphasize the potential benefits in increasing positive behaviors
across life domains.
87
INFORMATION, AWARENESS, DECISION-MAKING:
OBSERVATIONAL STUDY OF CLINICAL ETHICS APPLIED TO
PROGRESSIVE CHRONIC DISEASES
I. Giorgi, A. Giardini, L. Moroni, D. Pain, V. Esposito, M. Padovani,
P. Baiardi, G. Villa, C. Pasetti, Fondazione S. Maugeri, Clinica del Lavoro e
della Riabilitazione – IRCCS, Italy
[email protected]
Introduction: in the Italian culture an ethically complex issue encountered
relatively commonly by health care professionals is the family requests for
nondisclosure of advanced disease prognosis.
The aim of this observational study of clinical ethic was to assess patients’
disease and prognosis awareness, and to assess the knowledge of new
tools, such as the Advance Directives. In addition, the association
between quality of life and decision making process in end-of-life was
analyzed.
Material and Methods: upon Informed Consent, 123 (M=74, F=49; aged
58-75) inpatients with progressive chronic diseases were assessed in
Cardiology (30), Hemodialysis (38), Neurology (23) and Palliative Care (38)
Units. Patients compiled the “Information about disease and therapeutic
decisions” Questionnaire (created ad hoc for this study) and the “Mc Gill
Quality of Life Questionnaire” (MQOL-It); caregivers, when available, were
administered the “Caregiver Needs Assessment” (CNA).
Results: QoL scores did not differ significantly among diseases except for
ALS patients, which reported lower scores in the “Physical” dimension.
Generally, 87% of patients stated a good disease awareness and only 11%
expressed their preference not to be informed by doctors in case of poor
prognosis. Only few patients reported a correct definition of
“Overtreatment” (23%) and “Invasive procedures” (57%), moreover 72%
did not know the meaning of “Advance Directives”. Caregivers (n=48) did
not show Information and Support needs.
Conclusions: As to end-of-life ethical issues further interventions in order
to improve patients’ decision making processes and to promote in
clinicians effective skills to communicate bad news are necessary.
“RESPONSIBILITY” CONSTRUCTION
Ines Giorgi, C. Sguazzin, Marina Manera, Italy
[email protected]
This talk focuses on the integration between “responsibility principle” and
“hope principle” according to Bloch’s perspective. In this theoretical
framework four clinical cases will be analyzed. Patients’ histories of life
and diseases offer breathing spaces about therapeutic choices and
sharing of responsibility through relations with different health care staff.
PRINCIPLES AND ISSUES IN THE EVALUATION OF
PARENTAL COMPETENCY IN ISRAEL’S ARAB-MUSLIM
COMMUNITY
Emad Gith, Psychological Services of Araba and International Center for
Health, Law and Ethics – Haifa University, Israel
[email protected]
For Arab Muslim citizens of the State of Israel, the Islamic religious court
(the Sharia) is the legal body authorized to deliberate and rule in cases
involving child custody, adoption, and guardianship. Under Sharia law,
mothers have custody of boys and girls until ages seven and nine
respectively, after which they are transferred to the custody of their
fathers. In the absence of a father, children are transferred to the custody
of their grandfathers.
The Sharia court is asked to rule in cases of parental competency, and to
do so it commissions a professional psychological assessment of parental
competency. Since it is culture-dependent, this assessment notably
involves a number of professional and ethical issues, while addressing the
following facts: the Arab civilization is a collective consisting of clans
(hamulot); men’s status is higher than women’s; and the parental duties
of fathers and mothers are very different.
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UNESCO Chair in Bioethics 9th World Conference
Since psychological evaluation of parental competency refer to general
diagnostic data and authorized tools, they are not tailored to match the
Arab population. Almost all psychological services and mental health
centers employ psycho-diagnostic tests that, among other things, test for
the general level of intellectual performance. Yet, most examiners agree
that they must rely on their own experience and professional skills in
order to determine the etiology of a case or reach a diagnosis that reflects
the inner emotional or intellectual reality of a subject. Since the model for
evaluating parental competence in Israeli society in general is culturedependent, it is not practical for the Muslim community.
Therefore, there is a need to construct an evaluation model that
addresses this issue. Such a model must be based upon the principles of
Sharia law, take social differences into account, and provide psychological
tests that are tailored to the cultural context of Muslim Arabs in Israel.
THE DILEMMAS OF THE TRIAL PATIENTS WITH END-STAGE
Mario Giuliano, Sabino De Placido, University of Naples, Federico II, Italy
Despite significant advances achieved in cancer treatment and prevention
in the last decades, oncological diseases represent the leading cause of
death worldwide, accounting for 7.6 million deaths (around 13% of all
deaths) (2008 Globocan Data. http://globocan.iarc.fr/). Therefore,
evaluating novel anti-cancer therapies remains a major priority. Clinical
research is conducted following a series of steps, called phases; each
phase is designed to answer a separate research question. Phase I clinical
trials are the initial step of clinical research in human subjects and their
main goal is to evaluate drug safety and applicability. The use of healthy
volunteers to test new anti-cancer drugs in these trials is not appropriate
because of the likely side effects. Consequently, terminal cancer patients
who have exhausted all the conventional therapeutic options or for whom
there are no known therapeutic possibilities are typically selected for
these trials. In this perspective, early-phase trials can represent real
therapeutic opportunities for terminal patients, as well as crucial
gateways to the development of new anti-cancer therapies, possibly
useful for the entire cancer population. However, in these studies the
potential for therapeutic benefit is often low and the probability of side
effects high. Thus, there is considerable debate about the ethics of
terminal cancer patients participating in early-stage clinical trials. We
conducted a comprehensive review regarding all the ethical and legal
aspects of clinical research in terminal cancer patients.
COMMUNICATING BIOETHICS WITHIN FAMILY CONTEXT
Pasquale Giustiniani, Italy
[email protected]
The Declaration no. 32 of the European Parliament stated that 2014 will
be the European Year for the reconciliation between working life and
family life. Conciliation’s policies are intended to provide tools that can
concile working sphere and family sphere, allowing each individual to live
as best as possible the multiple roles it plays inside increasing complex
societies.
Probably, the term “conciliation” is still too weak, since it records and
implies the existence of a conflict, of a logic that pits the job – considering
it as a place of exact procedures, of schedules, rules, and management –
and family, which on the other hand seems a sensitive place, an affective
environment made of warm and emotional relationships without clear
rules because nobody can rule the heart...
On the one hand the “cold” working environment, on the other hand the
“warm” climate of loving relationships, considered as an essential
condition for design and management of notable bioethical issues:
planned parenthood, procreation of new human lives, safeguard of the
nascent human life, initial choices about the schooling of those who are
the youngest members of the community, the division of responsibilities
between the couple and, first of all, the issue of the education.
The current trend is to “educate” and to “form” younger generations with
the sole purpose of making them capable to assume, at due time, their
own “life orientation”.
Reassert the value of education means to invite to pay attention not only
on the transfer of “noetic packages” or “knowledges” from one
generation to another, but also on the proposal (made with the aim of
orienting towards autonomous choices) of values, trends, ways of being in
the world and, above all, of family models even traditional ones (like
those related to the heterosexual family based on marriage), with which
the younger generation must face in order to make conscious and mature
choices.
In this direction, our research group proposes to exceed the terms of the
conciliation, speaking rather of harmonization, both within the intrafamily dynamics and in the relationships between labor (defined as the
area of productive work) and family (understood not only as a
“consumers unit”, but as a group that produces a social capital).
From a bioethical and biopolitical point of view, all these argumentations
lead to the following consequences:
1. The bio-political governance of future and new families will no longer
apply the logic of contrast between work and family, as if there is an
opposition between the “strict” world of the market and the more
flexible rhythms required by the familial relationship.
2. The education in the medium and long term will have to invite the
younger generation to a process of mentalization, in which the
following bioethical themes will have an increasing relevance:
a) careful and informed management of human sexuality and fertility,
in a quest for a balance between different possibilities offered by
modern technologies in the field of medically assisted
reproduction (this one, moreover, is a field of “new work” close to
the family);
b) growth of affective, relational and sexual bonds of couple, who will
have to become more compatibles with times and regulations –
still too strict – of work environments, organizations and places;
c) relevance of the educational element, and not only in terms of
instruction and formation, in the definition of the essential
features which must have new families, which are small producers
of relational and social “capital”, giving priority to the themes of
human care, equal gender opportunities, welfare of children and
young people.
NARRATIVE AND THE CODE OF ETHICS:
THE “INSTRUMENTS” FOR AN ETHIC REFLECTION
ON NURSING PRACTICE
Paola Gobbi, Giovanni Muttillo, Rosa Anna Alagna, Anna Brunoldi,
Maria Grazia Castoldi, Anna Maria Gallo, Lorena Marioni, Claudia Passoni,
Debora Rosa, Milan Nursing Council (Collegio IPASVI Milano, Lodi, Monza
and Brianza), Italy
[email protected]
Objectives: The aim of study was about the narrative of nursing clinical
cases with an ethic value.
The research questions were: “Does the Code of Ethics represent a
useful/valid instrument for a nurse who has to take a decision concerning
an ethic problem in everyday nursing practice”? Each focus group (FG)
focused on the written narrative of real cases that happened in hospital
general units.
Materials and Methods: From October 2009 to February 2011, a monthly
FG was carried out at the IPASVI’s venue, for a total number of 12 FG. The
participants were asked to describe a real experienced clinical nursing
situation which generated an ethic problem in the multidisciplinary team.
Topics were: nursing in preterm newborn, respect of the living will of
patients, informed consent, administering of abortion pill, nurse roles in
clinical trials.
The analysis was conducted using: the Code of Ethics articles related to
the problem and other documentations referring to the specific topic.
Results: Research questions were confirmed in 9 cases out of 11: nurses
take decisions also about ethic-deontological problems with reference to
the relation with the other person, with the patient, the family and the
colleagues. The Code of Ethics represents a useful, valid instrument that
can be used in nursing practice.
Conclusions: Study was the starting point for a change that is already
being carried out: a group of nurses systematically is meeting to share
through narration their professional experience which can’t be eluded by
nursing profession.
DICTATORSHIPS REFLECT SOCIETAL FAULTLINES
Digvijay S. Goel, Southland Hospital, New Zealand
[email protected]
Objectives: Dictatorships afflict nations across the world randomly, from
Africa where primitive man evolved to Greece, the cradle of western
Abstracts of Oral Presentations
democracy. What does Hitler’s Germany have in common with Pol Pot’s
Cambodia, Stalin’s Russia with Pinochet’s Chile, Mussolini’s Italy with
Mao’s China? Are these random acts of God, or do they reflect a deeper,
shared malaise which renders these otherwise culturally, economically
and politically diverse countries vulnerable to despotic rule? This
intriguing question admits no ready, simplistic answer. The issues
involved are complex and merit interrogation from sociological and
psychological perspectives.
Purpose: To examine the proposition that identifiable societal faultlines
may have contributed to the divergent trajectories followed by India, a
vibrant, if at time chaotic democracy, and Pakistan, chronically under
military rule, following their creation in 1947, despite their common
ethnic, cultural and political heritage.
Methods: India and Pakistan were one country, one people, one
civilisation when they gained independence from British rule in August
1947. Subsequently, however, the two nations have followed divergent
trajectories. Using the case study method, the presentation examines
historical evidence to identify the causes underpinning this dichotomy.
Results: The roots of military dictatorships in Pakistan may be traced back
nearly three centuries to the ideological heritage of Shah Waliullah (170362), militralised into jihad by Sayyid Ahmed Barelvi (1786-1831),
articulated in an anglicised lexicon by Syed Ahmad Khan (1817-1898),
eventually culminating in the Pakistan resolution passed in March 1940 at
the Lahore session of the Muslim League. While Jinnah used the divisive
doctrine of distance to achieve his goal of a separate Muslim homeland,
he envisioned Pakistan as a modern, secular nation. Soon after his death
in 1948, however, Pakistan embarked on the path of Islamic
fundamentalism crafted by the Godfather of Pakistan, Maulana Maududi,
and carried to its inevitable culmination, the Islamization of Pakistan and
the perpetuation of military dictatorship by the God’s General, Zia ul Haq
Conclusions: Dictatorships mirror deeply entrenched and complex
societal faultlines going back in time which, given a fateful combination of
social, economic and political factors, widen and swallow democratic
institutions. Nations need to look back into their collective historical
unconscious to identify and deal with these critical issues if history is not
to repeat itself.
TOBACCO CONTROL POLICY IN THE EU:
PROTECTING PUBLIC HEALTH IN THE FREE MARKET
Iris Goldner Lang, University of Zagreb, Croatia
[email protected]
The negative effects of tobacco on public health have been subject to
concern and regulation by the EU for more than 20 years. Since the late
1980s the EU has been enacting tobacco-control legislation with the aim
to regulate tobacco products and restrict tobacco advertising. Its
objective has been to provide harmonised standards for tobacco
products, ensure consumer protection and curb tobacco consumption.
Having in mind public health risks, EU tobacco policy has, through the
years, become ever more restrictive, with the basic intention to
encourage tobacco users to quit, prevent tobacco initiation and protect
citizens from second-hand tobacco smoke. However, despite visible
achievements, the fact remains that smoking-related diseases are the
single largest cause of death in Europe today. Tobacco accounts for
700,000 deaths in the EU each year, with almost half of those dying
between 35-69 years of age, which is well below average life expectancy.
This paper will address the key EU legislative measures in the area of
tobacco control: the Tobacco Advertising Directive and the Tobacco
Products Directive. It will analyse the Proposal for a new Tobacco
Products Directive, its reasons, open issues and benefits. Special attention
will be laid on the balancing between the public health concerns and free
trade of tobacco in the EU. The nature of the public debate and, especially
the strategies pursued by the tobacco industry will also be taken into
account. The paper will conclude by examining areas where improvement
of the current tobacco control policy is still possible.
89
NURSES´ DIFFICULTIES TO TALK WITH PATIENTS IN THE
END OF LIFE ABOUT HEALTH CARE DECISIONS
1
2
Juana María Granero-Moya , Inés M. Barrio-Cantalejo ,
3
4
Antonio Frías-Osuna , Pablo Simón Lorda ,
Antonio Jesús Ramos-Morcillo5, Serafín Fernández-Salazar6,
3
Laura Parra Anguita, Pilar Peña-Amaro
1
Hospital S. Juan de la Cruz, Spain
2
Centro de Salud Almanhayar, Spain
3
Universidad de Jaén, Spain
4
Escuela Andaluza de Salud Pública, Spain
5
Universidad de Murcia, Spain
6
Hospital Sierra de Segura, Spain
[email protected]
Objective: To know the community nurses´ difficulties to talk with
patients in the end of life about health care decisions for their future.
Design: Qualitative methodology.
Location: Basic health zone.
Participants: Community nurses who are caring people in the end of life.
Main interventions: Fifteen recorded interviews after informed consent.
Analysis: transcription of speeches, coding of texts and grouping in
categories.
Results: Nurses find difficulties to talk with the patients about topics of
the end of life. These difficulties are: little time to talk, the family´s role,
the patient´s beliefs, few communication skills and little training in these
topics.
Conclusion: Talking with people who are in the end of life about their
wishes or their values for this stage can be very positive. This can improve
the patients' autonomy, reduce their suffering, avoid entries in ICU and,
moreover, reduce the cost of health care in the last days. But, it needs to
improve nursing education and to introduce communication skills in the
usual practice.
THE CESAREAN SECTION UNDER MATERNAL REQUEST:
ETHICAL LEGAL IMPLICATIONS
V. Graziano, M. Paternoster, P. Di Lorenzo, M. Niola, C. Buccelli,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
The Cesarean section under specific maternal request implies complex
and sensitive ethical- deontological issues.
These issues bring about a difficult dialectic confrontation between the
fundamental right of the patient to free self-determination in the choice
of type of delivery as well as treatment and respect of the physician to act
freely, without any imposition, according to the present scientific
knowledge with reference to fundamental ethical values (articles 4 and
13, Medical Deontological code 2006) in the very interest of the patient
and in compliance with one’s own professional dignity.
It has been often argued that a maternal request of a Cesarean Section
not justified by medical reasons does not conflict with the more general
principle of safeguard of health because it would be a therapeutic act
aiming at avoiding possible psychic damages related to labor’s pains and,
most of all, hypothetical damages to the fetus.
Such as argument makes the right to health prevails over the simple
obligation to preserve physical integrity and also in the light of the Italian
Constitution provisions analogously to what prescribed for voluntary
sterilizations and plastic surgery leads to the tenet that the voluntary
Cesarean section, deprived of strictly therapeutic motivations, does not
clash with any principle of legal legitimacy.
However, the refusal by the physician to carry out the voluntary Cesarean
section appears to be absolutely legitimate where the latter contrasts
with his/her technical- scientific as well as ethical-deontological
convictions provided that, of course, such a refusal does not immediately
and severely jeopardize the health of the assisted person.
In this respect, article 13 of the Code of Medical Deontology recognizes to
physicians the possibility of making their own choices of behavior in some
fields of activity.
Therefore, when no considerable and immediate injury is caused to the
pregnant woman/fetus (election situation) the medical decision is given
priority, whereas in case of great urgency the will as expressed by the
patient must be accepted.
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UNESCO Chair in Bioethics 9th World Conference
In any case, the clinical condition that lead to the Cesarean section (under
the patient request and /or under the physician’s proposal) as well as
those conditions that results in failing to perform it (even through under
election request) should be duly reported on the patient’s medical record
and documented by various examination i.e. imaging, lab tests and
specialistic consultation.
As conclusion to provide the patient with the correct information is
fundamental not only to obtain her consent concerning therapeutic
options, but most of all, to favor therapeutic choices that do not have any
negative impact both on the pregnant patient and the fetus.
LIVING WILL ACCORDING TO THE ITALIAN ACTS
Rosa Guarino, CIRB, Italy
[email protected]; [email protected]
The living will indicates the will of someone, when in his ability, expresses
the medical treatments he wants or not, when for any case he needs
them, especially when is not possible for him to express his dissent. This
document is considered an advanced directives concerning the treatment
even if the advanced instruction is a general direction expressed by the
patient in order to know which medical treatments he wants or not to
undergo. The living will indicates a very defined declaration containing
also the assistance for the religious purpose and the humanization of the
death.
It must be considered a very special object because it is referred to the
human life and in particular it is disputed for its legal characterisation. We
can easily understand that the living will in Italy is different from the will
expressed in the art. 598 c.c., for his effectiveness inter vivos and his not
patrimony act. We might even consider this phenomenon as a unilateral
atypical act according to art. 1324 e 1322 II comma cc. However, to
ascribe to it a legal value it should be compatible with the principles of
the legal system. The living will might be used to introduce to euthanasia,
forbidden in Italy because in contrast with the principle of human life
itself.
According to the jurists the question deserves a lot of attention because
the will is expressed when the patient is in his faculties and applied when
is no longer conscious. The living will should solve a lot of problems
referred to contemporary medicine: the technicality of medicine, its no
longer being human and incoming help from machines. It is going to be
very difficult the approval of the law concerning the living will and even
more difficult if the problems at the base are not solved.
BIOETHICS BETWEEN SCIENCE AND RELIGION
Willis Guerra, Flora Strozenberg, Edna Raquel Hogemann,
Federal University of Rio de Janeiro State, Law School, Brazil
[email protected]
This paper presents some recent bioethics issues that have provoked
great polemics in Brazilian scientific, legal and politic circles. As one of the
major catholic nations, Brazil has a strong religious influence in its
national life.
Thus, abortion – even in the case of anencephalic fetuses – brings out
direct and indirect influence of the Catholic Church.
The direct influence can be seen through catholic organizations, but more
important is what can be called the indirect influence, i.e., the JewishChristian moral operated not only by the opponents but also by the
defenders of the cause.
The controversy was so dramatic that the constitutionality of the issue
was judge by the Brazilian Supreme Court. Transformed in a political
judgment, the legal procedure brought as amicus curiae scientific
associations pro and against the abortion and the Confederation of
Brazilian Bishops.
The judges took years to give a sentence, in part due to the direct
pressure of the Church and in part due to peculiarities of the Brazilian
legal system.
Finally, after examining the concept of life in the light of religion, law and
medicine, it became clear that in a lay state such concept is not a
monopoly of one science, even if this science is medicine. The legal
concept of life can and should be defined by the law and by the Brazilian
legal procedures.
The judgment pointed out that – although medicine can be of much help
– philosophy reveals itself as the best source of robust answers to these
issues.
ETHICAL AND SOCIAL ISSUES RAISED BY RECENT
RESEARCH IN EPIGENETICS
Caroline Guibet Lafaye, Philippe Descamps, Centre Maurice Halbwachs,
France
[email protected], [email protected]
For a few decades new advances in epigenetics research have highlighted
some biological effects that the standard genetic theory could not expect.
Thereby, the effects of methylation are likely to change substantially
one’s genome expression and to be transmitted to the offspring and,
thus, affect several generations of descendants.
We attempt to highlight the ethical and societal issues raised by these
discoveries. As a first step, we will compare these issues to those raised
by genetic information. However, some issues are inherent to the specific
characteristics of epigenetic information, particularly concerning the
potential reversibility of these processes. We will then determine the
specific ethical issues raised by epigenetics, regarding four main areas:
1. Concerning intergenerational justice, the discoveries in epigenetics
raise the question of the responsibility of ascendancy towards its
descendants. Indeed, the behavior of the first might influence some
pathologies for the latter, mainly because of the heritability of
epigenetic modifications.
2. The epigenetic data also raise specific issues about environmental
justice to the public policies which we have to describe and clarify,
particularly in terms of liability and compensation for damages in
terms of environmental risks.
3. Epigenetics also raises issues about confidentiality and respect for
privacy, since the history of ancestry, and not only access to individual
genetic data, might provide therapeutic approaches or justify refusals
from insurers.
4. Finally, in terms of public health, taking into account epigenetic effects
raises the question of the division between policy and parental
responsibility.
COMMUNICATING ERRORS AND LEARNING FROM OWN
ERRORS: THE MEDIATION AS EDUCATIONAL INSTRUMENT
M. Gulino1, G. Montanari Vergallo1, F.P. Busardò2, S. Serinelli1, P. Frati1
1
Sapienza University of Rome, Italy
2
University of Catania, Italy
[email protected]; [email protected]
As for other professional activity, medical care includes the risk of
possible injuries and damages for final costumer. Technological progress
may contribute to make medical activity more complex, increasing the
number of medical claims with new specific medical errors. The
traditional legal system protects the quality of medical care, though it not
represents always a hundred per cent valuable solution. The risk to be
involved in a lawsuit makes doctors more reticent from share their
medical errors. Patient safety and improvement of medical care quality
represent the main goals of the clinical risk management that focuses its
activity on risks and medical errors reduction. Several studies showed the
relevance of communication in the patient-physician relationship and the
need to promote a more open-dialogue between patients and health
professionals.
Mediation may be included as a useful tool to promote dialogue between
parties and to minimize financial losses. Mediation gets parties to the
table and allows them to hear explanations behind medical errors or
complications and to hear apologies. Mediation is also useful for
collecting and reporting data on medical claims, in order to learn from
mistakes and improve quality of medical cares delivered by hospitals.
Taking into consideration the current Italian legislation ruling mediation in
the field of medical malpractice litigation, the authors will argue and
discuss the main barriers to alternative dispute resolution and how
mediation can be used to reduce medical errors.
Abstracts of Oral Presentations
BIOETHICS EDUCATION IN CLINICAL RESEARCH WITH
MODEL TOOL
1,2
1,2
1
Arja Halkoaho , Ville Leinonen , Kirsi Luoto , Tapani Keränen
1
University Hospital of Kuopio, Finland
2
University of Eastern Finland, Finland
[email protected]
2
Background: In clinical research scientific, legal as well as ethical aspects
are important. It is well known that clinical investigators in university
hospitals conduct their PhD-studies alongside their daily work. A
reconciliation of the work and studies are challenging. Aim of this project
was to create a web based learning environment (5 credits) in clinical
research bioethics and to find out if this method is suitable for teaching
bioethics. The course comprised of six modules: initial examination (to
assess knowledge in bioethics), information on research legislations and
permits of authorities, and writing an essay on research ethics,
preparation of own study protocol and final exam. All assignments were
designed with an idea that students can reflect them in their own
research.
Participants: 57 PhD-students (medical, nursing and dental sciences)
started and 46 completed the course.
Methods: Course evaluation was done by a questionnaire and the
response rate was 78%. Data were analyzed using quantitative and
qualitative content analysis.
Results: Course was seen useful and technically easy to perform. Students
were content with the guidance and teaching. Personal feedback from
teachers about own study was seen advantageous and increasing
understanding about own study. Course was also considered as valuable
for future research projects.
Conclusions: Ethical issues and legislation of clinical research can be
adopted more easily when students can reflect the principles upon their
own research project. Web Based teaching environment is a feasible
learning method for clinical investigators.
PRIMUM NON NOCERE V. CAVEAT EMPTOR
Ross W. Halpin, University of Sydney, Australia
[email protected]
Commercialism: A new threat to medical ethics
The barbaric actions of Nazi doctors in medical research during the
Holocaust were the genesis of the creation of the Nuremberg Medical
Code of Ethics. It was expected this code and codes established by the
research institute, would be recognised, applied and respected by
governments, medical research centres, institutions, such as universities,
and pharmaceutical companies, funding and marketing drugs and
therapies.
For centuries medical practitioners have committed themselves to the
Hippocratic Oath the main tenet of which is to “do no harm”. Here again
German doctors in the name of ideology abandoned the Hippocratic Oath
during Hitler’s term.
st
However in the 21 century are ethics at risk again? Has the scourge of
ideology as existed in Nazi occupied Europe been replaced by
commercialism. Has anything been learned from the Holocaust? What
factors have caused medical ethics to be undermined and even
abandoned?
Recent cases in which pharmaceutical companies as Pfizer, Glaxo Smith
Kline, Merck & company, Eli Lily have either incurred substantial fines or
have been subject to legal action is evidence that these companies have
conducted research and marketing unethically and illegally. In the
majority of indictments against pharmaceutical companies in the United
States over the past decade they have been found guilty of marketing and
selling off-label drugs aimed at the most vulnerable in our society;
children, adolescents and the aged. Deaths have occurred due to the
incorrect use of these drugs.
Research conducted in third world countries and sponsored by
universities, pharmaceutical companies and governments deemed
unethical and/or unscientific could not be authorised or conducted in
western developed countries. Some human experiments have resulted in
death.
Profit, it seems, has over-ridden ethics and humanity. Major
pharmaceutical companies are pressured by shareholders to maximise
profits and by governments to produce drugs that will be cost effective to
91
the health systems that in some cases are edging closer and closer toward
bankruptcy.
In respect to pharmaceutical companies profit and market share have
become the holy grail of both research and marketing. Has ethics been
overridden by commercialism and if so what are the repercussions?
CURRENT SITUATION AND ISSUES OF CONTINUING ETHICS
EDUCATION IN NURSING
Yuko Hamajima, Tokyo Medical University Hospital, Japan
[email protected]
Nursing ethics is gaining increasing importance due to changes in society
such as an elevated awareness of rights, advances in medical technology,
and the diversification of individual values in Japan. As a result of these
changes, nursing ethics has been a part of Basic Nursing Education at
schools and universities since 1997, when nursing ethics was inserted into
educational subject matter by nursing school regulation. However, the
methodology of nursing ethics is not concrete and confirmed. There is a
significant gap between growing ethical demands and the training offered
to deal with those demands. This gap is most pronounced in clinical
practice. Ward nurses in Japan face an average of one to three ethical
dilemmas each month, and as such, they need a methodological
framework to resolve these issues. Two areas can significantly improve
the nursing ethics framework in Japan: The first is through continuing
education. Unfortunately, there are currently no broadly accepted
guidelines for continuous education (CE) in nursing ethics. Each hospital
has different CE programs, and only 46 university hospitals (60% of all
university hospitals in Japan) include nursing ethics in their continuous
education programs. Among the programs that do provide ethics training,
there are no comparative or educational targets, and the content is not
comprehensive. The second is to utilize the bioethics committee, which
has been promoted by the Japan nursing society since 2006, for
discussion. Unfortunately most ward nurses underutilized this committee
due to time constraints or insufficient recognition.
BIOETHICS AND ITS CLAIMS FOR COMPETENCY
Jan Hartman, Jagiellonian University Medical School, Poland
[email protected]
Answering this question is of special importance in bioethics. What
depends on that issue is whether bioethics is rather to be a casuistry, a
kind of reflection supporting legislative processes and public discussions
on urgent scientific and medical problems, or is it supposed to take place
within the speculative core of moral philosophy, as its fully fledged part.
Myself, I opt for the pragmatic program and therefore for limiting of the
theoretical aspirations of bioethics, so that the circles dealing with these
issues acquire rising political significance. My argument is quite simple:
“Hard” practical philosophy, classical ethics and politics, rooted in its
traditional teachings – from Socrates to Hegel – does not provide us with
discourses congenial with the original theories of great philosophers,
discourses which would enable us to pass from general theory to detailed
practical problems, which are the true focus of bioethics. Thus, we have
the choice: either a conventional, fake references to classical thought in
morals, ornamenting the popular easy-to-understand arguments, typical
for bioethical discourses, or a sharp separation of the ground of “hard”,
speculative ethics from the ground of practical legal and political
argument, for which bioethics should constitute an effective intellectual
background, increasing its relevance and competence. My choice, to
repeat, is a self-limitation of the theoretical aspirations of bioethics in
view of its disability to catch up with the speculative advancements of
general ethics (which is due to its lack of practical relevance, by the way)
and taking into account the urgent social need for an effective intellectual
support for legislative processes and public discussions in the field of
medical and ecological practice. In my lecture I will present examples
illustrating my point.
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UNESCO Chair in Bioethics 9th World Conference
THROUGH THE SPECTACLES OF TOMORROW:
TOWARD A CASUISTIC MODEL FOR GUIDING CHOICE
IN HUMAN ENHANCEMENT ISSUES
Anders Herlitz, Sweden
[email protected]
In this article, I address the question: How should liberal democratic
societies deal with new human enhancement technologies that arise?
We have, or should at least, move beyond the stage where human
enhancement is discussed categorically, convincingly addressed by Alan
Buchanan. Instead, we need to deal with new enhancement technologies
on a case-to-case basis, what Buchanan somewhat misleading calls a
‘balancing approach’. Some human enhancement technologies are
good/acceptable. Some are problematic. Establishing guiding principles
will assist us in distinguishing acceptable from unacceptable
enhancements. Plausible examples include: precaution, justice, individual
liberty. In practice, principle-driven thinking will resemble a casuistic
approach that creates a taxonomy of the cases based on accepted
principles. Yet casuistry, it has been noted, is blind without over-arching
values, blind and open to be abused. Dealing with principles requires a
way in which to examine the specificities of cases, as well as normative
standards for evaluating the specificities.
In this paper, I make three claims concerning evaluations of new human
enhancement technologies: (1) In order to evaluate new human
enhancement technologies we are, implicitly or explicitly, relying on ideals
of what future societies ought to look like; (2) we need to shift the focus
of the debate to serious discussions on what normative ideals we want
governing us in human enhancement issues, we need to design spectacles
of tomorrow; (3) important values that should be included in ideals for
future societies that can be used to address human enhancement issues
are ‘opportunity maximin’ and flexibility.
DOES A CHILD ON CHRONIC VENTILATION HAVE THE
RIGHT TO DEMAND HOME CARE?
Zafrira Hillel-Diamant, Dvora Ben Zvi, ALYN Hospital, Israel
[email protected]
Medical and technological advances have enabled a new group of
patients to survive and be discharged to the community. In the past,
children and adults who remained, fully or partially, dependent on
mechanical ventilation, were forced to live in facilities able to provide safe
care. Today, these patients are able to lead safe and satisfactory lives at
home. Discharge to the community and participation in age-appropriate
activities such as school or work, is rehabilitation’s main goal. Ventilator
dependence is no longer a barrier to achieving this goal, but an issue to
contend with. Home-ventilation poses complex challenges for the patient,
the family and the community, and requires careful organization on all
levels.
The UN's Declaration of the Rights of the Child, adopted December, 1989
begins with stating: “THIS DECLARATION OF THE RIGHTS OF THE CHILD to
the end that he may have a happy childhood and enjoy for his own good
and for the good of society the rights and freedoms herein set forth, and
calls upon parents, upon men and women as individuals, and upon
voluntary organizations, local authorities and national Governments to
recognize these rights and strive for their observance by legislative and
other measures progressively taken in accordance with the following
principles…”
What happens when the child's rights and his family's rights clash? Whose
rights take precedence? What do we do in cases where the parents aren't
able or don't want to take the child home? How does the medical staff
remain neutral? Who decides what is best for the family without passing
judgment?
These ethical dilemmas will be the focus of this presentation.
TRANSPLANTATION OF HUMAN ORGANS: UNIVERSAL
PANACEA OR ONE OF THE WAYS TO SAVE THE LIFE?
Nataliya Hnatush, Ukraine
[email protected]
Globally, the transplantation of human organs sphere exists more than 70
years. This period is characterised by developing the mass transplantation
practice, increasing the quantity of declarations and ethical documents
drew up by the professional associations, new guidelines and new
legislation developed and adopted in European countries, in the USA, Asia
and Africa. In spite of such respectful stage of development,
transplantation of human organs field in all over the world still is a
controversial complex of the topics for ethical, social, medical and legal
discussions.
In Ukraine, Law “Human transplantation of organs and other anatomic
materials” was adopted in 1999. And the fact of law adoption proves that
medicine reached the level of the “physical” control above the human
death that is why transplantation has become a serious social and cultural
issue from a focused medical sphere.
The necessary regulation approach for the transplantation of human
organs has to be influenced by the political will of the state, specifying
strict limits between legal and illegal facts, organising the severe system
of the transplantation authorities; by medicine, developing the scientific
base for the transplantation procedure, practical base for the prevention
and disease early detection; and by the society, creating the adequate
response for the modern challenges of transplantation, creating culture of
the donation and human solidarity. The lifesaving goal should be a part of
the health care culture. In the transplantation field the medicine has to
become a system of the interpersonal relations, characterised as a mutual
exchange.
There are a lot of ethical questions in the field of the transplantation on
human organs, connected with the moment of the person’s death,
medical efficiency of the transplantation procedure, religion approach
and cultural challenges, economic benefits.
The main interrelated basic transplantation issues are a shortage of donor
materials and high price for the organs. From the national waiting lists
websites in the developed countries, it is clear seen that only one third of
patients on waiting list can get transplant. And such situation for the
organs demand favors to the transplantation commercialization and
development of the transplant tourism. People are starting to look for
other options how to survive, how not to die, travelling to purchase
organs illegally.
These indisputable facts have to make specialists generate the new ideas
and profound methods of the public health care and philosophy of human
treatment, starting from the prevention and early detection and finishing
with transplantation of human organs.
BIOETHICS EDUCATION IN A SOUTH AFRICAN UNIVERSITY
OF TECHNOLOGY – A MULTIDIMENSIONAL BEST PRACTICE
APPROACH
Willem A Hoffmann, Tshwane University of Technology, South Africa
[email protected]
The Tshwane University of Technology (TUT), Pretoria, South Africa, was
established in 2004. As such, its research context is still in a formative
phase. The nature of research projects at a university of technology differs
in essence from those of the more “traditional” South African universities
with medical schools in being more focused on science, technology and
innovation. As a result, the kind of research proposals submitted for
ethics review are predominantly for non-therapeutic and technologyfocused research in the fields of health sciences, social sciences,
education, management sciences and the arts, while very few research
projects involving clinical trials are conducted.
Article 19(d) of UNESCO’s Universal Declaration on Bioethics and Human
Rights encourages ethics committees to foster education in bioethics at
all levels. In the spirit of this declaration, the TUT Research Ethics
Committee (REC) designed and implemented a multidimensional bioethics
education programme at various levels within the university’s research
context. The content of the programme is fundamentally based on the
syllabus and study materials of the UNESCO Bioethics Core Curriculum,
together with scholarly knowledge and experience gained at the UNESCO
Ethics Teacher Training Course (Dubrovnik, Croatia, July 2012). The
programme is offered in the form of basic orientation lectures (1-2 hours),
basic orientation workshops (4 hours to 1-day) and comprehensive
workshops (2-days). The programme focuses primarily on the following
groups: REC members, postgraduate supervisors, postgraduate students,
research administration officers and members of South African and
Sudanese health professional interest groups (particularly in reproductive
biology, radiography and mental health). The presentation style is
predominantly interactive and includes a wide variety of case studies
(mostly from non-medical contexts), audiovisual material, moral games
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Abstracts of Oral Presentations
and reading material to illustrate and engage with the most important
bioethics principles.
The main aim of this presentation is to describe and discuss TUT’s
multidimensional best practice approach to bioethics education in a nonmedical university context on the African continent.
TRANSNATIONALIZATION ON THE TECHNIQUE OF
ASSISTED HUMAN REPRODUCTION
Edna Raquel Hogemann, UNESA – UniRio/Rio de Janeiro, Brazil
[email protected]
This paper's purpose is to present a reflective analysis about the process
of transnationalization in which the technique of assisted human
reproduction has been going to the extent that such a procedure has
been revealed as a true "fertility tourism", offered through packages for
those people who have financial conditions, but cannot through natural
means to realize the dream of membership. Through the dialectic method
of discourse, promoting the comparison of the thought of many authors
who focus on issues such as globalization, commodification of human and
technical exacerbation detriment of humans and their interpersonal
relations, the author seek to introduce issues that are the order of day
with respect to this global market arising from the tremendous advances
reproductive techniques in a society marked by economic interests, it
turns much more to the consumer and considers the human being as an
additional asset to be sold, since its conception. The author acknowledge
that they cease for tourism human reproduction is a trade that is worth of
human frailty, because relying one of the most intimate aspects of life:
the desire to be a mother or father or ultimately, the perpetuation of the
species.
EXPERIENCING SECLUSION: A PHENOMENOLOGICAL STUDY
Dave Holmes, Stuart J. Murray, University of Ottawa, Canada
[email protected]
The humanitarian, ethical, and legal issues associated with seclusion
rooms make them one of the most controversial management strategies
available. Despite this, the use of seclusion continues to be widespread in
psychiatric settings, with up to 20% of patients being secluded during
their stay in North American psychiatric hospitals. This study was
designed to shift the ethical discourse in a manner that is more
compatible with the lived experiences of psychiatric patients and the
nurses who care for them. Therefore, semi-structured interviews were
conducted with forensic in-patients and nursing staff in order to provide a
phenomenological exploration of the subjective experiences of forensic
psychiatric patients placed in seclusion, as well as the experiences of the
nurses who must seclude them. Phenomenology also facilitates an
understanding of the importance of the place of the lived body, a concept
that is largely ignored in mainstream bioethics. The results of this
research have the potential to help nursing staff consider the emotional
impacts of seclusion on patients, and encourage them not only to better
understand the experience of patients but also to prompt a
reconsideration of subjectivity and ethical practice in mental health care.
DIGNITY AND END-OF-LIFE DECISIONS IN ENGLAND AND
FRANCE
Ruth Horn, Angeliki Kerasidou, Ethox Centre, University of Oxford, UK
[email protected]; [email protected]
Dignity is one of the most controversial and yet commonly used term in
debates regarding end-of-life issues. The term “dignity” can take various
meanings. For example, it can be used to denote the respect owed to an
individual person or to signify the intrinsic value of humankind as a whole.
These two different understandings of dignity can inevitably lead to
different approaches to end-of-life decision-making.
This paper explores the meaning of the term dignity in two European
countries, England and France. Our philosophical and sociological analysis
compares public debates and legislation on end-of-life related issues in
these two countries. We will argue that in England dignity is most
commonly understood as respect for individual autonomy, whereas in
France dignity usually signifies respect for human life in a broader, holistic
sense. We will demonstrate that the difference in the conceptualisation
of the term leads to different ethical, and hence legal and practical
approaches to end-of-life issues. Our particular focus is on: (1)
withdrawing/-holding life-sustaining treatment; (2) respect for patient
preferences; and (3) assistance in dying.
Given the difference in the understanding of dignity, and the underlying
philosophical approaches it feels that there is still a long way to go before
we can establish common guidelines on end-of-life decisions across
Europe and beyond. However clarifying the use of the term dignity in
different discussions around Europe could hopefully facilitate this
endeavour.
EVALUATION OF TRAINING ACTIVITIES IN THE FIELD OF
ETHICS AND HEALTH COMMUNICATION IN ALBANIA
1,2
2
2
2
2
Adrian Hoxha , Genci Dervishi , Edjona Bici , Odela Risilia , Ola Hysaj ,
2
2
Imelda Kasapi , Klejda Risilia
1
Faculty of Medicine, Albania
2
National Association of Public Health, Albania
[email protected]
Background: The health professionals (HP) by participating in ongoing
education trainings update their knowledge in accordance with the
criteria defined by the NCCE. Ethics and health communication was one of
the training modules.
Aim: Evaluation of training activities of HP in the field of ethics and health
communication.
Methodology: The study was conducted through an anonymous
questionnaire in 8 districts of Albania, in 2010 and 2012 and includes
participants in the ethics and health communication training as general
practitioners, pharmacists, managers and nursing staff. The data were
analyzed with statistical package SPSS 19.
Results: 194 HP participated in the training of ethics and health
communication. 32% of participants was male and 67% female. 30.9% of
the participants took part in 2010 and 69.1% of them in 2012. 46.9% were
general practitioners / family doctors, pharmacists 41.2%, 3.1% managers
and 8.3% nursing staff. 61.9% assessed as very high level the lecturer,
57.7% of them the subject content, 54.6% the audio-visual equipment,
58.2% discussion topics and 45,5% the hall where the training took place.
42.8% assessed the knowledge obtained in this training as very new. In
88.1% the participants stated that their expectations about the training
were fulfilled. The statistical analyzes indicate a moderate positive
correlative relation with 0,01 significance level between age and
assessment of new knowledge in these training activities.
Conclusion: It was noted that attendance doubled in 2012 compared with
2010. Older Professionals assessed the knowledge as new also because
their university curriculum did not include ethics and health
communications.
THE INTERPLAY OF BIOETHICS AND HEALTH LAW:
GLOBAL AND LOCAL DIMENSIONS
Radmyla Hrevtsova, Institute of Medical Law, Pharmaceutical Law and
Bioethics, Academy of Advocacy of Ukraine; Head, Ukrainian Unit,
International Network of the UNESCO Chair in Bioethics (Haifa)
[email protected]
The existence and prospects of global bioethics and global health law as
distinct from international health law has been а debatable issue. With all
that, globalization and integration processes occurring in the modern
world open new opportunities and present new challenges and threats
for people’s communities. This is outstandingly manifested in developing
and newly emerged countries.
A natural strive for finding common grounds that could be used for
developing general ethical standards and, where justifiable, also legal
standards, is a challenging opportunity. This ambitious goal, however,
brings new risks the approaches to assessment of and account for which
should be elaborated and agreed upon.
One of those risks is the desire “to paint everyone with the same brush”.
Usually this “brush” presents a legal standard originated from the welfare
states having well-developed legal systems. As is known, the effective
legislative permits give the signal for the society of a moral acceptance of
an allowed practice. By virtue of legislative authorization of certain
practices in the countries serving as “models to emulate”, the “import” of
such practices to other countries the population of which does not always
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UNESCO Chair in Bioethics 9th World Conference
share the moral and ethical values and attitudes they are based on, occurs
(for example, euthanasia, authorization of same-sex marriages and
possibilities for such couples to enjoy assisted reproductive technologies
for their procreation, etc.).
Another risk is the legislative fixation of ethical principles acceptable for a
community, but with their formal utilization and emasculation of their
essence. The mandatory forms of informed consent diluting the essence
of the consenting process and the final authorization to research or
treatment is a significant example. This can also be exemplified by the
provisions appearing in legislations of the newly emerged states whereby
the “independent” ethics committees’ members are to be appointed by
…the order of the health care institutions’ chief doctors.
At the same time, integration processes give great opportunities that
should be utilized to the fullest possible extent by all countries, especially
by the developing and the newly emerged ones. Implementation of the
best legal practices and solutions capable of resolving the burning issues
is one of such opportunities. In some newly emerged countries, for
example, there exists the issue of “the two extracts from the medical
records” when the patient suffering from a hard-to-treat disease
dangerous to life and his or her relative who the patient’s medical
information is disclosed to in full, get two extracts with different medical
data, including diagnosis. This situation can hardly be accepted from the
ethical and legal viewpoint. An important task is therefore the exchange
of experience and implementation of good solutions for such problems.
Cross-fertilization – both between bioethics and health law and between
the bioethical models and legal doctrines dominating in different parts of
the world – seems to be the main direction for the development.
extraordinary originality of cultures, traditions and customs of its peoples.
Since there is common bioethical issues, especially clearly appearing in
the modern period of globalization and integration of the States and their
economies and cultures, regional and national characteristics of
perception of new challenges and threats of rapidly disseminating
scientific and technical progress suggest development of public policies
with mandatory inclusion of local worldview, philosophy of life and
attitude to many fundamental values.
The main idea of the regional policies of the States of Caucasus region is
that human values are not considered separately from the scientific and
technological progress and achievements in the field of biology and
medicine, a human being is a part of nature and needs healthy
environment to survive. Moral responsibility and ethical choice should be
the main priority in the use of benefits of progress.
At the same time the philosophical and traditional features of Caucasian
people are focused on the integrity of an individual and his inner peace,
noninterference in the corporeal and spiritual essence of being. The
interaction of two global biosocial systems – humanity and the biosphere
– is in the focus of ongoing regional states biopolitics. They based on
bioethical researches, such as forecasting, expert assessments and
recommendations for leveling the negative impact of the man and his
inventions on a live cover of the planet.
These measures are complemented by appropriate legislative,
administrative activities to involve non-governmental organizations, nongovernment service providers to develop and implement initiatives in the
field of bioethics, to transfer the certain power to carry out any practical
or research work.
ATTITUDE, PRACTICE OF CLINICAL PHYSICIANS IN
VIETNAM ON MEDICAL PROFESSIONALISM
ESTABLISHMENT AND DEVELOPMENT OF BIOETHICS
SCIENCE IN AZERBAIJAN
Tran Thi Thanh Huong, Le Minh Giang, Nguyen Duc Hinh,
Hanoi Medical University, Vietnam
[email protected]; [email protected]
Irada Huseynova, Jalal Aliyev, Azerbaijan National Academy of Sciences,
Azerbaijan
[email protected], [email protected]
Background: Physician is typical profession in society. Longtime ago, the
role of doctor was a healer and the position of doctor was focused on
doctor-patient relationship. Recently, medical professionals faced up with
many challenges: the innovation of modern technology, market economy
impact, costing for health care increase rapidly…the role of doctor in
society is not only doctor-patient relationship but also the influences from
third party payment, industrial companies…that is relationship between
physician association with society. Medical professionalism is defined as
contrast between physician and society. The “Doi moi” (renovation)
period in Vietnam started 1986 lead the changes in health care system. In
the social forum, there are many discussion concerning to fee for health
care services, health insurance, the cooperation between physician and
drug companies…These issues are main commitments in medical
professionalism. But there are limited studies on the issue.
Objectives: (1) To investigate the attitude and practices from clinical
physician in Vietnam on medical professionalism. (2) To describe the
cognitive from clinical physician on medical profession’s value
Method: The cross-sectional study was implemented in 1078 clinical
physicians at different specialized in Hanoi, Hue, Hochiminh cities by selffilled questionnaire. The questionnaire included 10 commitments on
medical professionalism and Hartung’ professional value scale.
Results: Physician’s value from doctor’s attitudes is prestige, supported
for the family members. Most of doctors were agreed with commitment
concerning to respecting patients, improving professional competencies.
There is gap between attitudes and practices concerning to medical error,
conflict of interest.
Conclusions: Medical professionalism needed to be added at the medical
ethics curriculum for medical students.
Following the global spread of science and technology, bioethics is also
becoming more global. At present, many international organizations
accomplish activities and have advisory agencies in the field of bioethics.
According to the recommendation of UNESCO, Azerbaijan National
Committee on “Bioethics, Ethics of Scientific Knowledge and
Technologies” was established in 1999 under National Academy of
Sciences. In 2005, a collection of papers on the problems of bioethics,
ethics of scientific knowledge and technologies was published. The
collection includes the researches who work in the science and education
centers on new directions. The published papers are dedicated to
elucidation of current problems of bioethics by outstanding Azerbaijan
scientists working in biology, medicine, informatics, etc. and activities
directed to their solving. The 18th session of the IBC of UNESCO was held
in Baku, 2011. The three-day session was organized by the National
Commission of Azerbaijan under the auspices of UNESCO jointly with
National Academy of Sciences. In the session, which lasted until June 2,
the ethical impact of traditional medicine, the state of bioethics in Eastern
Europe, as well as issues related to the execution of UNESCO declarations
on bioethics were discussed.
RESOLUTIONS OF REGIONAL AND BIOPOLITICAL ISSUES IN
SITUATION OF HISTORICAL AND CULTURAL DIVERSITY IN
THE CAUCASUS
Irada Huseynova, Baku State University, Azerbaijan
[email protected]
Historically Caucasus is a multicultural region with more than 50 ethnic
groups, peoples and nations. Being the crossroads of trade routes and
economic relations between East and West, Caucasus differs today by
BIOETHICS AND MUSLIM CULTURE.... A VIEW
Arshad Hussain, Mushtaq A Margoob, Rafiq Ahamed, North India
Bioethics Unit of the Network; Goverment Medical College, India
[email protected]
The strides in medicine and biology lead to challenges to established
cultural values of morality and ethics. Bioethicists worldwide are trying to
bridge this gap and provide an interface for discussions and debate
between the established norms and practices with innovations and
inventions of medicine and biology. Kashmir is a traditional Muslim
culture with modern and moderate world vision and outlook. We at
Government Medical College Srinagar an affiliate of Kashmir University
are in unique position to have vision of Islamic perspectives of various
bioethical issues and also the western view about bioethics. In Islam
human and life is regarded as supreme to be revered and protected."
whereas, if anyone saves a life, it shall be as though he had saved the lives
of all mankind."(Qur’an). From transfusion to cloning Muslims have a view
point about everything and the views are in conformity with established
Abstracts of Oral Presentations
bioethical practices. We also believe that when bioethics are part of your
value system, the practice of ethics becomes easy.
THE LEGAL POSITION OF SPERM DONORS ASSISTING
SINGLE WOMEN TO REPRODUCE
Elena Ignovska, University of “Ss. Cyril and Methodius”, Macedonia
[email protected], [email protected]
United Nations’ goals on population and development confirmed the
WHO definition of health, embedding it in the context of reproduction
defining reproductive health as “a state of complete physical, mental, and
social well-being and not merely absence of disease or infirmity in all
matters relating to the reproductive system and to its functions and
processes”. Thus infertility is considered beyond medical, as also social
condition, promoting access to available reproductive technologies not
only to couples but also to single women.
Sperm donations have already intruded families, causing fragmentations
of the fathers’ roles into genetic, social and legal. The right of the child to
know the origin and to be taken care for by both parents is the preferred
scenario for the child’s development (Incorporated in article 7 of the
United Nations’ Convention on the Rights of the Child). Sperm donors’
participation in couples’ family projects partially satisfies these criteria as
long as it is not hidden under the veil of secrecy, and parental roles of
biological fathers are substituted by social, thus legal fathers.
Nevertheless, this is not a case in voluntarily single women’s reproductive
projects.
Recent legislative policies give precedence of the truth about the act of
conception. Disclosure of the donor’s identity has shifted changes also in
donor’s attitudes, making them aware of the possibility of meeting the
child in the future, and possibly establishing regular contacts that may
look like “family life” (In context of Article 8 of the European Convention
of Human Rights). As a consequence, the number of donors decreased.
Those still willing to donate are more frequently associated with
reproductive, and not solely altruistic intentions.
The article will tackle the legal position of sperm donors assisting single
women to procreate from the relational perspective of rights and
responsibilities towards the conceived child and the mother in order to
investigate if establishment of fatherhood of the donor could be possible
(In terms of Article 6 (1) of the European Convention of Human Rights).
BIOETHICS AND AUTISM: SECURING THE MORAL
COMPASS OF CHILDREN WITH AUTISM IN DEVELOPING
COUNTRIES
1
1
2
Mona Indargiri , Felicity A. Crawford , Harold J. Bursztajn
1
Wheelock College, USA
2
Harvard Medical School, USA
[email protected]
Within the past three decades scientists (example, Koch, 2005) have
uncovered a wealth of difficult-to-measure habits of mind that lead
people to happy and fulfilled lives. These include persistence, learning
from one’s mistakes, responsible risk-taking, controlling one’s impulses,
listening and responding with empathy, “reading” people, situations and
ideas (Costa and Kallick, 2008). These scientists theorize that one’s
character is formed within one’s unconscious mind. Others, like
psychologist, Timothy Wilson (2002), contend that the unconscious mind
does all of the work. Contrastingly, scholars who study autism put forth
three prevailing theories, which identify the inability of an individual with
autism to recognize or understand others’ intentions (example: beliefs,
fears, desires or wants) – the very elements that were identified as
building blocks to success (Barnbaum, 2008), Given the centrality of the
aforementioned qualities how might educators and their families work to
secure the moral compass of children with autism? The impetus for this
question stems from a service learning work experience that lead the
authors to lead a workshop for parents of children with autism. These
parents sought the knowledge, the expertise and key understandings
about how to direct the inner lives of their children. The authors hope
that the question they pose for discussion would generate ideas for
collaborating to both develop studies and outreach programs aimed at
assisting parents and educators of children with autism in less resourcerich countries where access to well-established therapies and resources
are scarce.
95
CHILD ABUSE: EVALUATION AND GENERAL ASPECTS
Francesco Introna1, Valeria Santoro
1
University of Bari, Italy
[email protected]
Dental caries is an infectious, contagious and multifactorial disease that
was recently identified as the single most common chronic childhood
disease. Its control and prevention should be a priority for dentists, as it
may lead to malocclusion, and other problems related to mastication,
phonetics and esthetics. Dental caries may also be a risk factor for
diminished self-esteem and a gradual reduction of the child's rate of
weight gain; such conditions can be remedied after appropriate
intervention however. The presence of persistently untreated dental
caries is becoming more widely recognized as part of the phenomenon of
child neglect or more specifically, dental neglect because “dental caries,
periodontal diseases, and other oral conditions, if left untreated, can lead
to pain, infection, and loss of function”, resulting in a lower quality of life
for the child. Moreover, the effects of Early Childhood Caries (ECC) can be
long-term, increasing the risk of dental problems later on in life, and
interfering with basic social functioning, as well as optimal growth and
development.
With the aim of describing the correlation between early childhood caries
(ECC) and the phenomenon of child neglect, a self-report questionnaire,
which recorded socio-economic, demographic and dental service use data
was provided to a randomly chosen sample of parents at three pediatric
health service centers in Bari (Italy).
The questionnaires were completed during odontologic visits. Of the 63
children examined, 61.9% presented with ECC, of which 47.6% were
classified as Wyne’s Type I; 12.7% were classified as Type II; and 1.6% as
Type III. Interestingly, the frequency of Types II and III were shown to be
higher in low-income families (chi-square=8.50; p=0.03). Dentists should
recognize children’s susceptibility to ECC and their exposure to risk factors
for neglect, thus facilitating a primary prevention visit.
THE CHILDHOOD TRAUMA IN THE BREAKDOWN OF
FAMILY RELATIONSHIP: CLINICAL & BIOETHICS ASPECTS
Angelo Maria Inverso, Italy
[email protected]
Numerous research data seem to confirm the role of traumatic events in
the etiopathogenesis of numerous disorders, both physical and
psychological.
The early relational traumas caused by serious failures in the tuning
process in the relation of attachment, if combined with more relational
traumatic experiences, are significant risk factors in the development of
psychopathological problems. It is also known that, among the most
relevant traumatic factors, we can include separation and loss from
Attachment figures.
The current legal protection of child, although formally present in our
legislation, seem to be reluctant to develop assessment and intervention
tools to prevent the childhood trauma to the breakdown of family
relationships and to reduce its impact by improving the child’s resilience
and its parental figures.
Far from uncritical acceptance to what is called “therapeutic culture” that,
determine the dynamics resilience un relation to trauma and the need to
assess the importance of relationship as protective factors essential to the
resilience capacity of humans.
The purposed workshop will open a discussion on the this theme through
interventions that illustrate either research data on the Attachment and
childhood trauma, or possible tools of assessment and protection of
children involved in such traumatic circumstances.
CIRED ACTIONS: STUDY CASES
Guseppina Iommelli, L’Orientale University, Italy
CIRED (Interdisciplinary Centre for Research and Teaching Development)
workshops, disciplinary teaching between school and university, aim to
bring together the world of school and the university. In some workshops
CIRED also has tested Bioethics teaching. Here some study cases will be
discussed.
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UNESCO Chair in Bioethics 9th World Conference
INFORMED CONSENT, THE ROLE OF PSYCHOLOGISTS AS
COMMUNICATION EXPERTS
A. Iorio, V. Battimiello, A. Scuotto, C. Pietroantuono, D. Del Forno,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
In biomedical trials proper information is the means of choice to protect
human rights to independent decision-making and self-determination. In
the assessment of research protocols, the methods used to examine the
adequacy and exhaustiveness of written information to patients and the
procedure to acquire their informed consent are very delicate matters.
The informational material shall be drafted in a very clear-cut and
understandable manner so as to guarantee patient’s free and competent
decision-making inasmuch as both the informational material and the
informed consent form are an “imperfect” means to protect patients’
health and not a way for medical science to defend itself.
Since September 2005, the EC “Carlo Romano” of Università degli Studi di
Napoli “Federico II”, aware of the importance of these aspects when
assessing the ethical implications of trial proposals, has been applying a
procedure according to which an expert psychologist examines
informational materials and consent forms in order to guarantee the
information addressed to patients is intelligible.
In line with the Italian laws currently in force – receiving the principles as
in the document “Good Clinical Practice” – that have always emphasised
the fundamental conditions qualifying informed consent, i.e. good-quality
and intelligible information to guarantee competent and free choice to
the subjects involved in a scientific trial, the presence of a psychologist as
a communication expert has proven an indispensable asset in the
judgment process.
Based on a statistical analysis of the experts’ remarks and comments on
the informational materials received (over 500), it appears that most of
them, although compliant with the rules, would not communicate
adequate information to favour patients’ free and competent decisionmaking.
AN ANALYSIS OF REPRODUCTIVE GENETIC TECHNOLOGY
AND ASSISTED REPRODUCTION WITH A FOCUS ON
ETHICAL, RELIGIOUS AND LEGAL CHALLENGES IN PAKISTAN
Ayesha Irshad, Biocentre, Medical University of Innsbruck, and
Management Center Innsbruck, Austria
[email protected]
Assisted reproductive technologies (ART) and reproductive genetic
technologies (RGT) are intertwined and co-evolving. The later comprise
preimplantation genetic diagnosis (PGD), sex selection (either through
PGD or sperm sorting) and hypothetical genetic modification, all based on
concepts of optimizing ‘outcome’. RGT are used to overcome certain
forms of inherited disease and may serve the quest for a ‘perfect baby’ (or
‘designer baby’) and ‘human enhancement’. In addition, ART are
increasingly used to fulfill socially and culturally framed requests, e.g. for
family balancing or to enable post-menopausal women or homosexual
couples to have genetically linked children. The realm of ART and RGT is
loaded with countless ethical issues, particularly as different social
practices and legal regulations as well as economic inequalities within and
among countries create numerous vulnerable groups and chances for
exploitation.
In Pakistan, like in other countries, ART and RGT are well established and
offered to its citizens. However, there is little knowledge about the
spectrum of techniques being offered and used as well as the ethical and
legal debate referring to this field. Islam is the state religion in Pakistan
according to its constitution of 1973. As many aspects of ART and RGT
cannot be explained on the basis of Islamic teaching, it is currently unclear
how these technologies fit into cultural and religious standards. Here, I
will present an overview of the ART and RGT landscape in Pakistan and
analyze the practice in the context of Islam.
JUDICIAL INTERVENTION IN PRIVATE HEALTH CARE
POLICIES IN BRAZIL
Daniela Ito, Brazil
PROFESSIONAL ETHICS IN EXTREME CIRCUMSTANCES:
RESPONSIBILITIES OF ATTENDING PHYSICIANS AND
HEALTHCARE PROVIDERS IN HUNGER STRIKES
Nurbay Irmak, University of Miami (PhD Student), USA
[email protected]; [email protected]
Hunger strikes have become a less remarkable form of protest, especially
for those who are imprisoned or who seek political change. Hunger strikes
present a serious ethical challenge for physicians and other healthcare
providers. On one hand, physicians have a duty to preserve life, which
may entail intervening before the hunger striker loses her life. On the
other hand, physicians’ duty to respect the autonomy of patients who
refuse medical intervention also entails respect for hunger strikers’
decision to refuse nutrition. While this sort of conflict is ubiquitous in
health care, refusals of care for political ends has not had the same
degree of consideration as, say, refusals on religious grounds and such
refusals may be misinterpreted as a form of exploitation. Moreover, in the
case of prisoners, physicians may also have additional duties of obedience
to other authorities, sometimes the very same authorities that brought
about the hunger strike.
International medical guidelines state that physicians should follow the
uncoerced advance directives by hunger strikers. Since such directives are
rare, it is typically the case that physicians are left to decide for
themselves when they are faced with an unconscious striker considering
both her values, previously expressed wishes and her best interest. In this
presentation, the ethical responsibilities of physicians and healthcare
providers in hunger strikes are reconsidered. The presentation will offer a
practice guide for managing patients who resist medical care on political
grounds.
The objective of the present study is to discuss the reasons and the
solutions for the current need of Judicializing of the Private Health Care in
Brazil. The reasons for the transgressions committed by the Health
Insurance Plans to the detriment of rights and the interests of its insured.
The applicable penalties. What are the roles of the regulatory bodies?
Why does the State fail in promoting regulatory policies in this kind of
activity? The object of this discussion is the presentation of the Brazilian
reality, the solutions imposed by the Brazilian Judiciary Power and how
the companies in this segment act before the concession of judicial orders
in favor of the insured.
The civil and criminal liability of these companies’ agents and directors as
one of the feasible solutions. How the Brazilian legislation deals with the
issue. What are the legal applicable codes?
This study will allow the students, Law operators and health care
professionals to know, based on the Brazilian law and compared laws, the
difficulties and the solutions adopted by the Brazilian juridical system,
always considering the prevalence of the general principles of the Law,
and above all the principle of dignity of the human person over financial
and political interests.
THE REGULATION OF SURROGATE MOTHERHOOD IN
SOUTH AFRICA: A HUMAN RIGHTS ANALYSIS OF THE
GENETIC LINK REQUIREMENT
Donrich W. Jordaan, South Africa
[email protected]
Surrogate motherhood in South Africa is regulated by a recent piece of
national legislation, namely the Children's Act of 2005 ('the Act'). The Act
makes provision for altruistic surrogacy, and outlaws commercial
surrogacy. Altruistic surrogacy is further tightly regulated, with the Act
requiring, amongst others, that the intended parents and the surrogate
mother must first approach the high court to confirm their surrogacy
agreement, before they may proceed with IVF.
Abstracts of Oral Presentations
One specific aspect of the Act is the 'genetic link requirement', which
entails that –
• in the case where the intended parents are a couple, the gametes of
at least one of the parents must be used to create the child; and
• in the case where the intended parent is a single person, that person's
gametes must be used to create the child.
The effect of this genetic link requirement is that –
• an infertile single person (who because of infertility cannot contribute
her or his gametes) is effectively banned from using surrogacy; and
• a couple of whom both persons are infertile are also banned from
using surrogacy.
It would therefore seem that the genetic link requirement creates a
paradox in the Act: While surrogate motherhood is intended to help
infertile persons, the genetic link requirement excludes these very people.
In this paper, I will analyse the human rights dimensions of the genetic
link requirement.
HUMAN RIGHTS AND NIGERIAN PRISONERS: ARE
PRISONERS NOT HUMANS?
Istifanus Joshua1, Y.Y. Dangata1, O. Audu2
1
Kaduna State University, Nigeria
2
College of Health Sciences, Benue State University, Nigeria
[email protected], [email protected]
In Nigeria, just like many other parts of the world, one of the most
extensively discussed issues on the public agenda today is the increase in
crime rate and increase in prison population. Investigations revealed that
the prison services have been neglected more than any other criminal
justice agency in Nigeria. For example, most of the prisons were built
during the colonial era for the purpose of accommodating small number
of inmates. The aims of imprisonment are protection, retribution,
deterrence, reformation and vindication. Human Rights are the basic
guarantees for human beings to be able to achieve happiness and selfrespect; consequently in most jurisdictions, the Human Rights Act
confirms that these Rights do not stop at the prison gates. However, most
States fail to meet the Human Rights obligations of their prisoners. On
health, for example, every prison should have proper health facilities and
medical staff to provide dental and psychiatric care. This article highlights
some of the unmet needs of Nigerian Prisoners which include, inter alia,
living in unwholesome cells, delayed trial of inmates, lack of voting rights,
access to information, lack of conjugal facilities for married prisoners,
poor and inadequate nutrition, poor medical care, torture, inhumane
treatment and the need to protect Prisoners in a changing world. The
present report has policy implications for reforming prison services in
Nigeria, and countries that sing from the same song sheet with Nigeria on
prison services, to conform to the Fundamental Human Rights of
st
prisoners in 21 century.
Acknowledgements: Kaduna State University, Kaduna, Nigeria, for
funding.
ETHICS COMMITTEES IN POLITICS –
THE MEANING OF ETHICAL DELIBERATION FOR POLITICAL
DECISION-MAKING
Corinna Jung, Ina Otte, Institute for Biomedical Ethics, Switzerland
[email protected]
Background: The number of ethics commissions in politics is increasing.
Most countries in Europe now have at least one established ethics
commission or council at command that is to provide ethical advice for
government or parliament: In 2001, for example, the Austrian chancellor
has put in place the so called Austrian Bioethics Commission; in the same
year, the German chancellor has appointed the National Ethics Council
(which was renamed German Ethics Council in 2008). In parallel, the
German Parliament appointed several short-term commissions like the
commission “law and ethics in modern medicine” (2000-2002) or the
follow-up commission “ethics and law in modern medicine” (2003-2005).
In Switzerland, the so called National Advisory Commission on Biomedical
Ethics was established by the Swiss Federal Council in 2001 and the
Federal Ethics Committee on Non-Human Biotechnology already in 1998.
Objective: The huge number of ethics committees worldwide may be
seen as an indicator that politics require advice on issues where a quick
answer to the question what is “right” or “wrong” is not easy any longer.
97
But how is ethical advice used in policy-making? How do politicians deal
with the provided ethical expertise?
Methods: document analysis and semi-structured interviews with
members of ethics commissions and politicians
Presented results: In our oral presentation, we will first focus on the
ethical advice provided by the various ethics committees and councils in
Switzerland, Austria and Germany. Then, on the basis of a case study from
Germany, we will analyse and illustrate the impact of ethical advice on
political decision-making.
LONG ACTING INJECTIONS ANTIPSYCHOTICS:
ETHICAL ISSUES
Irket Kadilli, “Spedali Civili”; University of Brescia, Italy
[email protected]
Long acting injections (LAIs) antipsychotics serves as reliable therapeutic
option for non-adherent and chronic psychotic patients. Their use in first
episode schizophrenia is proposed. To date, ethics of LAIs use is poorly
addressed.
Voluntarism: Often, mentally ill individuals have low education and
partial decision-making capacity to understand the risks and benefits of
the treatment proposed and the manner of medication delivery,
especially during an acute psychotic episode. In case of serious side
effects, (e.g. neuroleptic malignant syndrome, persistent long QTc, tardive
dyskinesia) LAIs delayed clearance (long half-life) might be clinically
concerning. Moreover involuntary treatment with LAIs is not clearly
established by law and clinical practice.
Beneficence: Guidelines about the use of LAIs exists, but unfortunately
LAIs are not optimally prescribed, thus shifting benefits and risks balance.
Current, LAIs long term efficacy (relapse prevention) and safety (e.g.
metabolic, neurologic) data are discordant or not available. Drug
registration requirements and patent expiration might play a role.
However being too permissive with LAIs (first episode use) or not inclusive
or using fixed rather than flexible doses might harm patients and disorder
outcome.
Justice: In US, minority ethnic groups (Black, Hispanics) are more likely to
receive LAIs than white patients; while in UK receive higher doses.
Fortunately, some recent European surveys shows positive attitudes of
patients and mental health staff regarding LAIs. The distribution of risks
and benefits and accessibility to evidence based healthcare practices is a
right and should be shared equitably in society.
Conclusions: Psychiatric advance directives, LAIs pharmacological
knowledge, government funding and public awareness are obligatory.
BIOETHICS IN THE SYSTEM OF FUNDAMENTAL UNIVERSAL
HUMAN AND NATIONAL VALUES
Nigar Kalandarli (Doctoral Candidate), National Academy of Sciences of
Azerbaijan, Azerbaijan
[email protected]
Resolution of moral problems of bioethics requires not only medical
education and experience, but also of legal knowledge. Modern society
with its cultural diversity and pluralism needs to take into account
national specificities and traditional values.
In Azerbaijan, the urgency and necessity of scientific research in the field
of bioethics has been realized long ago. For an independent, sovereign
republic one of the typical priorities is moral attitude to life like
fundamental human values.
The postulates enunciated in the international documents assert the
priority interests of the individual:
I humanistic values and scientific and technological progress must be
integrated.
ii humanistic goals have priority with respect to research.
Following the path of self-development, Azerbaijan is committed to
universal standards of human rights to life, health, privacy and dignity,
according to national, cultural diversity, pluralism and mentality of the
people living in the country.
Starting from 1992, a number of important regulations aimed at the
protection of human rights have been adopted in the Republic of
Azerbaijan. Such laws as "On the protection of public health", "On health
insurance", "On Psychiatric Assistance", "On the pharmaceutical activity",
"On Sanitary and Epidemiological Welfare of the population," "Radiation
98
UNESCO Chair in Bioethics 9th World Conference
Safety", "On drug treatment services" and etc. are among them. The most
important of them is the act adopted in 1997 – the Law "On public health
protection of the Azerbaijan Republic."
Bioethical processes implemented today in Azerbaijan are carried out in
close integration with the international. The right to a decent life and to
health care is a basic inalienable right enjoyed by every citizen of the
country. Assigned to the group of the most important social and cultural
rights, health insuring and protection, integrity, dignity and autonomy of
man have been declared in the very first national legal acts, including the
national Constitution.
ETHICAL ISSUES IN INTERNATIONAL LEGAL ACTS AND
CONSTITUTIONAL LAW OF THE REPUBLIC OF AZERBAIJAN
Sona Kalandarli (Doctoral Candidate), Baku State University, Azerbaijan
[email protected]
Constitution of the Azerbaijan Republic joined to many humanistic
international acts, establishes the basic human rights such as the right to
life, to live in safety, personal integrity, health, life in a healthy
environment (Article 27, 31, 32, 39, 41). Today the main existing bioethics
law "Health Protection of Population of Azerbaijan Republic" contains
regulations on the rights of patients, the possibility to choose your doctor
(Article 24, Ch.IV), refusal of treatment (Article 27, Ch.IV), information
about your health (Article 25, Ch.IV) etc.
At the same time, national legislation limits recommended by
international documents patient’s right to detailed information by the
following: ‘’At the negative prediction of the disease all information about
it is passed to the relatives or legal representatives of the patient or at the
request of the patient the information are reported to him in a cautious
manner". The law also reflects the principle of refusal of the previously
given consent for treatment or clinical trials –by patient (volunteer) or
legal representative (Article 37, Chapter VI).
The list of rights and freedoms the international agreements contained
are not unconditional and comprehensive for each state. National
legislation offers additional rights to citizens which are determined by the
nature and structure of the social system, the level of economic
development, historic traditions, moral and ethical characteristics. The
cultural diversity of different peoples, which is the source of sharing
innovation and creativity and the common heritage of mankind, cannot
be used counter to national peculiarities.
The interaction of international legal instruments in the field of bioethics
and national law is in accordance with the good will manifested by the
state.
In such cases, there is no violation of the sovereignty of the state. The
state itself, without outside imposing, fulfills international legal norms
according to the principles and traditions of constitutionalism.
Following this discussion I will argue that the time has come for courts to
recognize the existence of a new head of damage, namely, interference
with the right to autonomy. According to this approach, when a patient's
right to autonomy is infringed, that patient suffers an injury for which he
is entitled to compensation. This injury is unrelated to the existence of
physical injury or to proof that a different decision would have been made
by the patient upon becoming fully informed.
I will argue that recognition of interference with the right to autonomy as
a new head of damage is commensurate with the idea of patient
autonomy underlying the doctrine of informed consent. I will further
claim that adoption of this rule is consistent with considerations of
deterrence. Finally, I will suggest that recognizing this new head of
damage provides a solution to issues that go beyond the framework of
informed consent, such as claims for wrongful birth or wrongful
pregnancy.
HUNGER STRIKERS IN DETENTION – THE ISRAELI
EXPERIENCE
Tami Karni, Leah Wapner, Malke Borow, Israeli Medical Association, Israel
[email protected]
Hunger strikes are a form of non-violent protest, often implemented by
prisoners, who have little or no other means at their disposal to voice
their protest.
The management of hunger strikes raises difficult ethical dilemmas. How
can a doctor reconcile his obligation to preserve life with the obligation to
maintain human dignity and respect autonomy?
International ethical consensus holds that a prisoner who willingly
embarks on a hunger strike is not to be force fed or treated against his
will. On the other hand, medical professionals are challenged by being
forced to stand idly by and watch a patient's condition deteriorate, even
to the point of death. Other ethical dilemmas include the fact that
keeping hunger strikers together can foment discontent and peer
pressure, but separating them (especially to solitary confinement) may be
undue punishment.
The Israeli Medical Association position recognizes the clash of interests
but states that a physician shall not participate in the force feeding of any
hunger striker or try to dissuade him from the action he has freely chosen.
Rather, the role of the physician is to explain the health risks involved,
and to regularly verify the hunger striker's wishes, including what he
wants done in case he loses consciousness.
Besides written guidance, the IMA provides an anonymous hotline for
prison doctors and access to an online course. The association is also in
regular contact with the Israeli Prison Service, the Ministry of Health and
the International Committee of the Red Cross to find acceptable ethical
and medical solutions.
INFORMED CONSENT, AUTONOMY AND COMPENSATION
IN THE TWENTY-FIRST CENTURY – A CALL FOR A NEW
APPROACH
ETHICAL DILEMMAS RELATING TO THE DIAGNOSIS AND
TREATMENT OF PEOPLE WITH AUTISTIC SPECTRUM
DISORDER – THE PSYCHIATRIC PERSPECTIVE
Nili Karako-Eyal, College of Management, Israel
[email protected]
Nachum Katz, Geha Mental Health Center, Israel; Sackler Faculty of
Medicine, Tel Aviv University, Israel
[email protected]
The patient’s right to autonomy has been protected under law through
the doctrine of informed consent for the past six decades.
From the mid- 1950s physicians have been under a legal and ethical duty
to inform the patient of proposed medical treatment. Ancillary to the
duty of disclosure is the physician's duty to receive the patient’s free
consent. At the heart of these rules stands the ex-ante recognition of the
patient’s right to autonomy.
However, apart from extreme cases which fall within the ambit of the tort
of assault, the patient’s right to autonomy receives protection ex-post
only if two conditions have been met: the patient suffered actual damage
and the patient can prove that had he been fully informed he would not
have consented to the treatment. Thus, protection of the right to
autonomy is subject to proof of actual damage and proof that a different
decision would have been made upon obtaining full information. A
patient whose right to autonomy has been infringed but who has not
suffered actual injury or cannot prove that he would have decided
differently is not entitled to compensation. Respectively, in neither of
these cases are legal sanctions imposed on the physician who infringed
the patient's right to autonomy.
Over the last few years as the number of patients diagnosed with autism
rose sharply, interest and discourse have greatly increased. At the center
of the discourse reside the many ethical questions that arise in autism.
The diagnosis of autism is relatively new and its definition changed over
the years thus resulting in a sharp increase in the number of patients
diagnosed with it.
A recent change though, resulted in a narrower definition. Thus many
people who were considered as having the disorder are suddenly
considered normative, raising significant ethical issues regarding the
power of professionals to maneuver diagnosis definitions, impacting
decisions on support and treatment for individuals.
Autism spectrum's definition includes people completely unable of
communicating and people with high cognitive and verbal ability, many of
whom claim to have just neurodiversity thus making diagnosis and
treatment unnecessary. They also object to research on changing
behavior patterns and on pre-natal genetic identification, diagnosis and
prevention in autism.
Abstracts of Oral Presentations
Another issue relates to studies on individuals in the spectrum, with
particularly low functional ability, who are under guardianship and unable
to provide informed consent. These studies are done without the
participants' awareness or consent.
The issue of treatment, once a diagnosis is established, is controversial
among professionals, families and patients. While many view this as a
variety of "normative" that needs to be recognized, understood,
respected and accepted rather than changed, others see the difficulties,
distress and suffering that need changing.
Regarding treatment – what should be treated? Should stereotypical
behavior, characteristic for this condition, be reduced? Others perceive it
as anomalous and bothersome but the patients claim that it brings relief,
helps cope with changes or represents an attempt to have the
surroundings cater to their abilities and needs.
For those dependent on caretakers, should the treatment focus strictly on
the patients' needs or should caretakers' needs also be considered?
Much criticism has been voiced against the rigidity of some of the
treatment methods but it is hard to ignore their effectiveness and their
treatment achievements.
Those are only a few of the ethical conundrums arising from treatment of
people with autism spectrum disorders, their families and society at large.
It stands to reason that the more knowledge and experience we
accumulate on this topic the more issues will arise.
WHEN CAN A FAMILY PHYSICIAN REFUSE TO TREAT A
PATIENT?
Yisrael Katz, Israel
[email protected]
The physician has a moral and legal obligation to treat his patients. This
does not mean that he must treat everybody who enters his clinic nor
does it mean that he has to comply to all of his patient's requests.
In this essay I will try to explain under what circumstances a physician is
permitted (or maybe obligated) to refuse to treat a patient or refuse a
specific request for treatment. I will base my position on basic medical
ethic norms and, in addition, a Jewish ethical perspective.
Can a doctor refuse to treat a patient who does not have medical
insurance in his Kupat Cholim (Israeli HMO)?
When a patient has a medical emergency he should be treated without
delay. In a non-emergency situation, if the patient has medical insurance
but is not registered in the physician's HMO, treating him may lead to
medical and economic complications. In the Israeli setting most patients
may be safely referred to their own HMO without any damage.
There are two different models of primary care clinics. "Walk in clinics" –
every patient can come to every doctor and receive treatment. This
model provides high availability of the doctors but it also has its
disadvantages, mainly in the area of continuity of care. The other model
assigns a personal physician to every patient. The physician knows his
patient well and has more responsibility for the coordination of his
patient's treatment. When working in this mode there is justification for
refusing to treat other patients. Nevertheless, when faced with an acute
problem, the physician should try to provide basic care to any patient who
arrives at the clinic.
Can a physician refuse to give specific treatments that a patient requests?
If in the doctor's opinion there is exposure to unwarranted danger in the
treatment, the doctor should refuse to give it. When the patient asks for a
treatment that is not efficient the doctor can consider it and in certain
situations he might give it. In many cases the treatment is effective but it
may cause damage to other patients or to the public health. Common
examples are patients who want to receive expensive medical evaluation
or treatment (at the expense of other more important interventions) or
receive urgent referral to a specialist (and make other patients wait
more). My position is that family physician should also weigh the benefit
of other patients, especially when the other patient is a "real" patient and
not only "statistical".
99
PAY FOR PERFORMANCE (P4P) AND ESTRANGEMENT:
MORAL TRANSFORMATION OF RESIDENTS UNDER A NEW
PAYMENT POLICY
Mustafa Volkan Kavas, Hasan Tut, Hande Ermiş, Funda Aytekin, Duygu
Erkal, Turan Canmurat İzgi, Ankara University School of Medicine, Turkey
[email protected]
Pay for performance (P4P) policy was first brought to Turkish Healthcare
System in 2005 as a part of a package of policies, called the Healthcare
Transformation Program, by which the government basically integrated
the system to free-market-economy. Through years, P4P has become the
main payment mechanism in healthcare. In the framework of this policy,
healthcare professionals’ labor is scored principally according to the
quantity of the medical applications they make, such as surgical
interventions, examinations or tests. Urgent results were the increase in
healthcare professionals’ workload, the emergence of futile medical tests
and operations, and competition for more payment among individual
healthcare professionals. P4P was widely debated on different platforms
especially by means of its negative effects on the conduct of professional
ethical values in clinics.
Traditionally residents represented the group of physicians who take on
the biggest part of workload in third-stage hospitals in Turkey. In this
study we focused on the changes in the working conditions of residents
with the emergence of P4P and how the policy influenced their
motivation to practice their professional values. We conducted 3 focus
groups with 24 residents from different institutions. The findings showed
that after P4P residents are more estranged towards their professions,
their patients and themselves as so-called lettered physicians. Less
motivation to practice ethical codes in the wards and a drastic loss of
hope regarding their future are worth mentioning. We believe that this
study can be a significant contribution to the ethics debates on healthcare
policies in Turkey.
EMOTIONAL INTELLIGENCE AS METHODOLOGY AND
DIDACTIC TOOL IN TEACHING BIO-ETHICS AT NURSING
SCHOOLS: PRACTICAL STEPS
Daniella Keidar, International Center for Health, Law and Ethics, University
of Haifa, Israel
[email protected]
Human ethics deals with human values and human values are based on
emotions and emotional processes which are required by mutual
relations. Bio-ethics has to do with the veritable existence of mankind,
physically, mentally and emotionally. Therefore, the process of bio-ethics
teaching should evolve the students not only through their cognition, but
also through their emotions.
This lecture concerns the way of teaching bio-ethic in general and at
nursing schools in particular, or "how" to teach it. Bio-ethics teaching is
not just "another" theoretical subject. It lies in the soul and core of the
nursing and related professions. Its teaching is not only the mere
transference of the lecturer's professional knowledge and skills.
All domains of Bio-ethics should treat human beings as a holistic entity.
Medical ethics has to do with veritable existence of mankind, physically,
mentally and emotionally. The sensitive alliance between body and soul
generates dynamic processes either of motivation, desire, challenge,
determination, activity and achievement or of despair and abandonment
during periods of sickness and personal challenges which transport a
person into a world of different realities.
The cultivation of didactic skills by means of Emotional Intelligence (EI)
which one of its main parts is effectual communication should do much to
link the students’ emotions, mentality and behavior with the learning
process, converting their periods of study into joyous, thought-provoking
experiences, provided that their integration in the learning process has
been consummated.
My lecture brings my experience in enriching lecturers of bio-ethics in the
ways of using variable teaching methods and tools. My approach is to
reveal to the lecturers ways of creating in their students an emotional
involvement in the process of learning the subject. In order to reach such
an end I teach the lecturers to use didactic skills which will help guiding
them to bring their students to a level of connecting and combining the
learning material to emotional involvement. Such a combination will help
assimilating bio-ethics to their future personal and professional lives.
100
UNESCO Chair in Bioethics 9th World Conference
PLACEBO CONTROLLED CLINICAL TRIALS:
HOW RATIONALE FOR THE USE OF PLACEBO IS JUSTIFIED
1
2
Tapani Keränen , Arja Halkoaho , Anna-Maija Pietilä
University of Eastern Finland, Finland
2
University Hospital of Kuopio, Finland
[email protected]
1
1
Ahmed Binsumeit Khitamy Badawy, Sultan Qaboos University, Oman
[email protected]
Background: Randomized controlled trials (RCT) are the gold standard of
clinical research. RCT often include placebo control thought the
justification of this method is actively debated. Ethicists suggest that
investigators should explain to the trial subjects why placebo is used
especially when an existing therapy is available. Also an estimate of the
risks associated with placebo arm should be given.
Objectives: Aims of the present study were evaluate how the use of
placebo is justified in clinical trials and how participants are informed
about possible risks of placebo treatment. The analysis was based on
review of study protocols, statements of the national principal
investigator, and participant information leaflets.
Methods: We scrutinized the records of the Ethics Committee of the
North Savo Hospital District from the year 2006 to the end of 2012.
Included in the present analysis were placebo-controlled clinical drug
trials. Altogether 52 studies were identified. We then reviewed the study
protocols, statements of the national principal investigator, and
participant information leaflets.
Results: Majority of the 52 studies were Phase III trials (n=40). In 42 trials
placebo was used in disorders in which standard therapy was available.
Seven of the trials recruited vulnerable populations (eg. children, subjects
with dementia). Eighteen of the study protocols (35 %) and 15 of the
statements of the principal investigator (29 %) provided a rationale for
the use of placebo. The justification of placebo was presented in only 12
(23 %) of the participant information materials. None of the study
protocols and only 9 (17 %) of the principal investigator statements
provided an estimate of the risks associated with the use of placebo
during the trial. Most of the information leaflets (46/52, 88%) failed to
describe possible risks of associated with the use of placebo.
Conclusions: The justification of placebo control is poorly presented by
the protocols and investigators of RCT. Furthermore, and even more
importantly, study participants may remain inadequately informed about
the risks and discomforts associated with the use of placebo.
“MIND” AND HEALTH – AN AWARENESS PROGRAM FOR
MEDIA
1
1
2
THE OMANI NATIONAL COMMITTEE FOR BIOETHICS:
MAKING REGULATIONS AND DRAWING UP LEGISLATION,
WITH SPECIAL REFERENCE TO EMBRYONIC STEM CELL
RESEARCH AND END OF LIFE ISSUES
2
Asima Mehboob Khan , Rizwan Taj , Rachel Jenkins , Stuart Lancashire ,
1
Waqas Ahmed
1
Pakistan Institute of Medical Sciences, Pakistan
2
Kings College, UK
[email protected]
Objective: The authors assess the effects of mental health awareness
training program on the attitudes and understanding of media
professionals.
Duration & Place: Two days training workshop was held in Department of
th
th
Psychiatry, Islamabad on 5 – 6 Oct 2012.
Method: Workshop was organized by Dept. of psychiatry, PIMS in
collaboration with Kings College, London, British council, THET and NHS.
Sixty media personals were invited for workshop including Senior
Journalists as master trainer (Print media and Electronic media), and were
randomly selected from Rawalpindi / Islamabad. A comprehensive
curriculum, involving the slides, videos, group discussions, question &
answer sessions and Stress management techniques. Structured pre- and
post-test were used for screening the knowledge of participants regarding
mental health.
Results: Score of participants on pre-test was 26.7%, while post test score
was 73.2 %. It showed that mental health awareness trainings can affect
the knowledge and attitude of journalists.
Conclusion: It was an informative and highly important training for media
representatives. All participants after training planned to write and
project mental health issues in media. In this way the extreme important
issue will get highlighted in society. More people will get oriented and will
seek treatment and be able to live healthier lives.
Seeking knowledge is compulsory in Islam. It encourages man to
contemplate and explore new horizons for the benefit of humanity. Stem
cell research is one of these new horizons that promises a wide variety of
benefits for humanity. However this scientific promise, has been
surrounded by ethical, moral and religious anxieties. More than any other
professional, a Muslim physician is confronted more frequently with
issues that demand Islamic legitimacy of his actions. He is always
challenged with controversial ethical issues which he is supposed to
decide upon: e.g. embryonic stem cell research, fetal rights with respect
to the woman's autonomy, therapeutic cloning, trans-sexual operations,
plastic cosmetic surgeries, extra-uterine conception, end-of-life issues etc.
These recurrent controversial and problematic issues sometimes puts a
Muslim doctor in a dilemma between the current medico-legal issues
based on secular law, which could contradict his Islamic guidelines and
principles.
The Omani National Committee for Bioethics whose membership include
renowned Muslim scholars, jurists, physicians, researchers and
humanities meet regularly and comes up with regulations and legislation
on bioethical issues for the Sultanate of Oman.
This paper will first review the duties and objectives of the Omani
National Committee for Bioethics. Secondly, the paper will highlight the
tools used by this committee in formulating the bioethical guidelines and
regulations for the country. Thirdly, the paper will examine the
committee's mutual relationship with other National Bioethics
Committees in the Arab and Muslim world. Finally the paper will discuss
the challenges facing this committee with special reference to stem cell
research and end-of-life issues.
ORGAN TRANSPLANTS – RATIONAL AND ETHIC
PROBLEMS
Eliezer I. Klainman, Gefen Cardiac Health Center; Israeli Academic College,
Israel
[email protected]
Organ Transplants are no longer in the realm of science fiction, but are a
routine and accepted treatment. The source of the implanted organ may
be another person, living or dead, an animal, and most recently, a
genetically engineered artificial creation. Along with the medicalscientific-technological development that has taken place in this area,
many complicated ethical-moral issues have arisen, many of which have
no black and white solution. Thus, we are often faced with the need to
choose among the lesser of evils and to sacrifice a positive value in favor
of a higher and a more important value.
The approach and the solutions to such dilemmas change from society to
society and from one time period to another.
The moral-ethical questions in the realm of transplant are as difficult and
complex as are the scientific-medical problems. There is no doubt that we
must invest efforts in ensuring high moral standards that are equal to the
efforts made in the scientific medical realm. It seems that there are
certain moral principles which have to be incontestable:
• The considerations for organ transplant must take into account
minimal risk to the donor and maximum chances of success for the
recipient.
• Organs from deceased donor should be taken only after death has
been certified according to relevant definitions.
• Organs must not be taken from a donor without his consent or the
consent of his family.
• The life of animals is not equal to that of humans in terms of the
taking of organs for transplant.
• All Men were created equal and therefore priorities for transplant
must be set in accordance with accepted medical criteria that do not
take into consideration who the recipient is.
Abstracts of Oral Presentations
HEALTH LAW AND ITS IMPACT ON DEFENSIVE MEDICINE
Lucy A. Knouse, USA
[email protected]
My interest is in the bio-law area that concerns the impact of wrongful
birth lawsuit rulings in the United States of America on the practice of
medicine. My presentation will focus specifically on the development of
defensive medicine as a way medical practitioners protect themselves
against multi-million dollar awards to plaintiffs who blame medicine for
the birth of their disabled children who they would have preferred to
have aborted rather than give birth to. This bio-legal area developed after
the passage of Roe v. Wade and began to flourish in the 1990’s. It
corresponds to the proliferation of genetic testing and various pre-natal
testing techniques that allow for a greater awareness of medical
conditions for pre-born children. To help set the stage for this discussion, I
will recap a few medical cases that will provide enough background to
clarify the types of medical situations that have resulted in substantial
awards. Then I will explain the juridical issues that arise from these
lawsuits and the problems created which negatively impact the equitable
administration of justice for all parties involved in these suits. I will then
recap some of the unintended side-effects that hurt society by failing to
advance medical science for the welfare of the unborn.
ETHICS AND REGULATION OF AESTHETIC MEDICINE –
A SINGAPORE EXPERIENCE
1
2
K.H. Koh , Y.H. Liow
Tampines Polyclinic, Singapore
2
Temasek Polytechnic, Singapore
[email protected], [email protected]
1
Aesthetic medicine is currently a rapidly growing field in medicine. It
differs from ‘conventional medicine’ in that the physician has moved from
the cure of diseases and relief of suffering, to enhancing bodily image and
feeling good. Many physicians, enticed by the lucrative and burgeoning
area of aesthetic medicine, are now jumping onto this bandwagon which
is traditionally helmed by plastic surgeons. However, unregulated
cosmetic and aesthetic surgery is a worldwide concern and the field of
aesthetic medicine clearly requires regulation. As a profession, physicians
are governed by their own code of ethics. Society trusts the medical
profession to regulate itself and abide by its traditional professional
standards. Physicians involved in aesthetic practice are also bound by the
same ethical principles governing traditional medical practices such as
autonomy, beneficence, non-maleficence, justice, and the principle of
best interests. Physicians that fail to meet the trust and professional
conduct and standards may result in loss of public confidence in the
medical profession, thus bringing disrepute to the medical profession. In
Singapore, the existing ethical guidelines appear to be inadequate to
regulate this emerging field. A number of recent court cases in Singapore
have raised several issues on aesthetic medicine and these have shed light
into certain medicolegal and ethical issues surrounding aesthetic
medicine. In this article, we will examine the recent changes in the
regulation of aesthetic medicine in Singapore as well as highlight the
ethical principles that govern the way aesthetic medicine should be
practiced.
YOUTH WORK AND ETHICAL REFLECTION:
STIMULATING INTERPROFESSIONAL ETHICAL REFLECTION
J. Kole, M. A. van den Hoven, Utrecht University, Netherlands
[email protected]
In the field of youth work, many different types of professionals are
active, varying from social workers to psychologists, from pedagogically
trained professionals to police officers and custodians. Youth work is a
domain where professional moral dilemmas frequently occur, as it
concerns fundamental issues regarding parental autonomy, a child’s
safety and well-being and the privacy of a home and a parental relation.
(1) When professionals are urged to cooperate more with other
professionals, in order to stimulate effective and efficient care, new
interprofessional dilemmas enter the fore, such as how and when to
share information about clients, or to be strict on patient confidentiality.
(2) In a research project we aim to identify the interprofessional ethical
issues that professionals encounter within the field of youth work, and we
101
develop sessions for moral reflection that address these interprofessional
moral aspects. (4) We made an inventory of these topics based on expert
interviews and focus group interviews. In this presentation we will both
present what topics were coded in the interviews, and how we aim to
distribute ethical knowledge on these topics within the field of youth
care. Not only did we develop sessions for moral reflection that are
offered to professionals in the field, but we also try to reach more people
by offering information on topics via a website and relate ethics teachers
and interested course participants together. The following topics are
specifically addressed: good professionalism, responsibility, professional
timidity, parental autonomy and professional confidentiality.
UNDERSTANDING WHY PEOPLE REFUSE TO PARTICIPATE IN
RESEARCH MAY STRENGTHEN MUTUAL TRUST & ETHICAL
STANDARD IN BIOMEDICAL RESEARCH: EXPERIENCES
FROM FOLLOWING UP REFUSALS IN KILIFI HEALTH &
DEMOGRAPHIC SURVEILLANCE SYSTEM, KENYA
Francis Kombe, Johnson Masha, Mary Mwangoma, Betty Kalama,
Hassan Alphan, Salim Mwalukore, Evasius Bauni, KEMRI-Wellcome Trust
Research Programme, Kenya
[email protected]
Background: KEMRI/Wellcome Trust Research Programme (KWTRP) is a
busy multidisciplinary biomedical research programme in Kenya. Every
four months, over 260,000 people living in the Kilifi Demographic
Surveillance System are visited to collect their demographic data. This
forms the backbone of sampling for many epidemiological and clinical trial
studies. Between 2000 and 2010, 99 households (0.33) declined to give
their demographic information to the KHDSS team. We report on the
outcome of following up these households and its implication in the
conduct of ethical research in a rural community in Kenya.
Methodology: We visited the 99 households and systematically
documented their reasons for refusal. Discussion guide were used to
generate an open narrative account of perceptions, attitudes and
experiences underlying refusals. A detailed report of the discussion was
produced after each interview. Report analysis and workshop discussion
of emerging issues of the first 42 interviews identified key themes to
focus on in subsequent interviews. Content and thematic analysis was
conducted at the end of the 99 interviews.
Findings: 63% of the homes that refused were from the urban area. The
majority those who refused were men (59%). The most common reasons
given for refusing were; previous adverse experiences in research (45%),
inadequate interpersonal communication (41%), negative rumors about
research and study procedures (24%), concerns about levels and types of
benefits (24%) and religious background (14%). Majority were happy to
continue giving their demographic data after the follow-up. Following up
refusals could held to build mutual trust and ethical standard in research.
GENDER-BIASED PRENATAL SEX SELECTION:
INTERNATIONAL ORGANIZATIONS AND THE ETHICAL
REASONS BEHIND DEALING WITH THE ISSUE
Johanna Kostenzer, Management Center Innsbruck, Austria
[email protected], [email protected]
A strong preference for male offspring and increasing rates of sex
selective abortions have been observed in numerous countries across the
globe leading to an imbalance of the birth outcome of girls and boys. The
natural sex ratio at birth ranges from 102 to 106 males per 100 females.
In certain Asian and most recently also in some Southeastern European
countries, distorted sex ratios have reached a level of up to 120 male per
100 female births.
The intended killings of female fetuses raise numerous ethical questions.
Ensuring sexual and reproductive health rights, preventing discrimination
and protecting future generations constitute key factors in this context.
The issue of prenatal sex selection is hence also of great concern to the
international community and United Nations agencies as well as the
European Union and the Council of Europe have put the issue on their
agenda.
International organizations share the need for action even though they
deal with the issue from different perspectives such as public health,
demography, gender equality or human rights. However, the extent to
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UNESCO Chair in Bioethics 9th World Conference
which ethical implications play a role in this agenda setting process
remained unclear so far. My presentation will critically analyze if and in
what way ethical considerations play a role in priority setting of
international organizations in terms of gender-biased prenatal sex
selection with particular focus on Southeastern European and South
Caucasian countries concerned.
responses of students have been analyzed. As result typologies of diverse
semantic understanding have been proposed and the given responses
have been compared with the standard definition of euthanasia.
WHEN DOES HUMAN LIFE BEGIN … ENDLESS
CONTROVERSIES?
CHRISTIAN ANTHROPOLOGY VS. THE NEW
ANTHROPOLOGY & THE QUEST FOR HUMAN PERFECTION
Asim Kurjak, Dubrovnik International University, Croatia
[email protected]
Tomasz Kraj, Pontifical University of John Paul II, Poland
[email protected]
The list of necessary or sufficient conditions for being a person includes:
minimum intelligence, self-awareness, self-control, a sense of time,
futurity and the past, capability of relating to others, concerns for others,
communication, control of existence, curiosity, change and changeability,
balance of rationality and feeling, idiosyncrasy and neo-critical
functioning. The infrastructures of the above mentioned abilities reside in
the cortex that is well developed from the 30th week of gestation and on.
From that point of view, every neonate or fetus during the third trimester
of gestation are person, in a moral or an ethical context. There is no doubt
that the embryo and fetus in utero are human individuals prior the birth.
The child that is born is the same developing human individual that was in
the mother's womb. Legal capacity, as provided for by civil law, is an
ability of a natural person to enjoy rights and obligations. The human
being becomes a natural person at the moment of birth. If human life is
worth being protected by law only after delivery, for what reason does
perinatology exist and perinatologists fight for? Nowadays, lots of medical
treatments, interventions and even surgeries during pregnancy are done
for the benefit of the unborn child, and not due to the mother's health.
From legal perspective, it is better for a child to be born prematurely than
at the right time, since from the moment of birth child's life is protected
by law. From the medical point of view, this must seem as an absurd, as
the best environment for a child to develop is his/her mother's womb
during all the period of the nine month pregnancy. All the known
evidence support the human fetus being a true ontological human
individual and consequently a human person in fact if not in law.
In the current debate, we witness a conflict between the Christian
concept of man vs. concepts which justify in vitro fertilization (IVF),
genetic enhancement, or the reassignment of sexuality. Modern concepts
cannot disregard the historic perspective of the consistent doctrines
which the Catholic Church has maintained throughout her 2000 year
history and which constitute the precursors of contemporary bioethics.
Although she has adjusted specifics occasionally to address new
developments, she has always based doctrine on immutable core
principles. The current conflict lies neither in the novelty of the new
proposals, nor in a conflict between religious and lay worldviews, but
rather in concepts of man and human perfection. Some human traits may
be regarded as disordered and incompatible with a particular concept of
human perfection. The new proposals tend to involve physical changes
based on technological manipulation, with a goal of developing a superior
being, while Christian proposals do not seek to manipulate man’s being,
but to develop his existing potential within criteria of acceptable reason.
The new proposals rely on a Cartesian view which constitutes a human as
his mind (cogito ergo sum), which has dominion over his body including
authority to reengineer it according to any project that mind conceives. In
contrast, the Christian concept views the human subject as a unity of
mind and body which may not be reshaped to meet a questionable goal
of human perfection. The technological tools within the new concepts are
in no way superior to the more personal attributes like virtues, perfection
of the human will, prayer, and ascesis within the Christian concept.
BIO-ETHICS ISSUES IN LITERATURE AND THE ARTS:
“ECOLOGY OF THE SOUL” MINI-ESSAYS
Emilija Kukubajska, University Goce Delcev, Macedonia
[email protected]
Ethical messages in literature and the fine arts represent core issues in
the course of civilization and its context in history, culture, society and
religion. This presentation is a practical proof in the literary genre of miniessays, in synergy with fine arts illustrations, both from Macedonian
authors. Moral messages seem to have no expiration date in their
application and reapplication in the course of human thought, despite of
its revising transformation and new bio-ethical utilization. This special
session proposal offers a gallery of both traditional and revised
worldviews on aesthetics and ethics as viewed in cases of vigorously
challenged issues of the 21st century. Samples on individual and
institutional level are being monitored by the creative imagination of a
poet and educator, and then simultaneously paired with fine art images
that complement the synergy of the visual and verbal interpretation of
ethical issues of today. Twenty seven samples are presented in a book of
artistic and poetic miniature essays on virtue and vice in poetry and the
arts, entitled Ecology of the Soul. Selection of this publication will be read
and visually presented at the conference special session.
UNDERSTANDING OF EUTHANASIA BY MEDICAL STUDENTS
Josef Kuře, Masaryk University, Czech Republic
[email protected]
Both in the general public and in the professional communities, diverse
understanding of euthanasia can be found. This fact does not support any
meaningful discussion of euthanasia. So as a necessary prerequisite of any
euthanasia discussion a clear semantics of the term and concept called
euthanasia seems to be the starting point. The paper, contributing to this
clear semantics, investigates understanding of euthanasia by medical
students. As methodology an open question has been taken and the
MOVIES AND DRAMA RELATED TO BIOETHICS IN JAPAN
Mitsuyasu Kurosu, Tokyo Medical University; Head, Japanese Unit of
International Network of UNESCO Chair of Bioethics, Japan
[email protected]
Movies and dramas are useful for bioethics education. Students and a
teacher are able to see them together and discuss bioethical issues. In
addition they can study culture, social system, history and so on. UNESCO
recognizes usefulness of movies, dramas and documentaries in education
and announced “BIOETHICS CORE CURRICULUM SECTION 2: STUDY
MATERIALS ETHICS EDUCATION PROGRAMME” in 2011. These materials
include movies, dramas and documentaries as well as cases and books.
However Japanese movies have not been adopted in “BIOETHICS CORE
CURRICULUM SECTION 2”, then I investigated Japanese movies and dramas.
The list of movies has recently been made up by the Medical ethics and
professionalism committee in the Japan Society for Medical Education
(http://jsme.umin.ac.jp/ba/eas/jmse_recommend_movies.html). The list
has 48 Japanese movies and 190 movies produced by other nations,
which are classified into 13 categories and are mentioned with title,
director, produce year, nation and keyword. Hereafter an each summary
of these movies should added to this list.
A DVD of dramas was produced for medical ethics education in 2009. The
DVD has 8 dramas directed by Yasushi Koshisaka. Running time of each
drama is around 20 minutes. The topics of the dramas are cancer
notification, treatment refusal, abortion, autopsy report, terminal care,
Down syndrome and so on. I have used this DVD in bioethics class for a
few years. The students ring after seeing the DVD. Because the DVD ends
up question and there is no answer in it. This DVD is very helpful material
for bioethics education.
ETHICS AND EVOLUTION
Peter Lachmann, University of Cambridge, UK
[email protected]
Thomas Huxley in his book “Evolution and Ethics” stated that ethics
existed to counteract the cosmic struggle (of evolution by natural
Abstracts of Oral Presentations
selection). It will be argued that this is fundamentally incorrect and that,
far from counteracting evolution, ethics form the building blocks of
cultural evolution. This argument carries with it the conclusion that ethics
themselves must evolve and be subject to natural selection. While certain
ethical precepts – altruism, respect for human life and truthfulness – have
been shared by nearly all human moral communities over long periods of
time, others, such as attitudes to slavery, cannibalism, human sacrifice
and suicide, have varied widely. It follows that the idea of a natural law
underlying all ethics is intrinsically flawed.
It will also be argued that the evolution of ethics by natural selection is a
Darwinian and not a Lamarckian process and has no end in view. Indeed,
many current ethical prescriptions remain those appropriate to an
endangered species where increase in numbers is of paramount
importance. With the transformation of humans to an endangering
species where overpopulation and overuse of resources have become
critical issues, it is clear enough that further evolutionary change in ethics
is urgently required.
THE FULL DISCLOSURE POLICY: A DIFFICULT BALANCING
BETWEEN INFORMATION TO THE PATIENT AND
COMMUNICATION TO THE ODONTOLOGISTS
Alberto Laino, University of Naples Federico II, Italy
[email protected]
In the exercise of professional practice, it can reach the observation of the
dentist a patient with adverse event of a treatment made by another
therapist.
In such a circumstance arise challenging matters of ethical and
professional conduct in relation to the qualitative and quantitative
aspects of the information to be provided to the patient and, eventually,
what action to take against the colleague.
With regard to the first problem, is proposed the opportunity to
communicate to the patient his/her oral health, as well as any error
committed by the colleague. In such cases, the difficulty task is to
ponderate the right words
Regarding the second aspect, may be considered appropriate to establish
a dialogue with the colleague who gave care to the patient in order to
make informed about the damage appreciated, and about the tecnica
choose that led him to make that type of treatment.
Likewise, it should arise the opportunity to inform the Professional Order
about a treatment grossly negligent. Furthermore, it must be numbered
the possibility that the diagnostic mistake could be due to the same
clinician who appreciates it, rising an ethical obligation to communicate
the negative findings to the patient, providing any information and at the
same time to remedy to the negligent conduct after to disclose the
mistake to the patient.
END OF LIFE DECISIONS IN ONCOLOGY – DECISIONS
AGAINST LIFE-PROLONGING TREATMENT IN YOUNG
PATIENTS
1
2
2
Katsiaryna Laryionava , P. Heußner , W. Hiddemann , E. Winkler
1
National Center for Tumor Diseases (NCT), Germany
2
University Hospital of Munich, Germany
[email protected]
1
Background: With the progress in medical treatments and technologies,
decision-making at the End-of Life (EOL) in modern medicine has become
a complex process, involving a range of different psychological, social and
ethical aspects. The aim of this empirical study was to explore oncology
clinicians’ and nurses’ perception of difficult situations in their clinical
practice as well as their understanding of ethical problems regarding EOL
decision-making.
Methods: We conducted 29 face-to face qualitative interviews with
physicians and nurses working at the Department of Hematology and
Oncology at the LMU University hospital in Munich, Germany. The
interviews were analyzed according to the grounded theory approach.
The normative implications of the results were assessed.
Results: Asked about challenging situations in clinical practice physicians
and nurses named frequently decisions against life-prolonging treatment
in younger patients. Physician’s arguments were often based on
psychological (emotional) reasons: young patients have not achieved a
“reasonable” length of life. However, this aspect was not mentioned
103
when asked about perceived ethical problems. The following aspects
were named as ethical ones: risk-benefit analysis and assessing of medical
futility of treatment, taboo around “dying and death”, economical
aspects, detecting of patient’s will and dealing with discrepancy between
the involved parties in the decision making.
Discussion: Dealing with young patients at the end of life was perceived
as one of the most difficult situation in clinical praxis but not as ethically
relevant. Young age was often named as explanation for trying further
aggressive treatments. The perception of treatment decisions in young
patients with advanced cancer being primarily a psychological problem
could lead to possible neglecting ethical aspects such as risks /benefits
consideration and consequently to overtreatment of young patients at
the end of life.
LEGAL PROTECTION OF PATIENTS' RIGHTS IN CHINA
Hong Le, Huazhong University of Science and Technology, China
[email protected]
Based on the research of the current Chinese legislation, paper analyzes
legal protection of patients' rights in China's development stage and its
characteristics. Detailed analysis of China's current legislation that the
patients' rights has been covered by the current legislation in China, and
analyses current legislation situation, put forward relevant suggestions for
improvement.
ENVIRONMENTAL MEDICINE IN THE 21ST CENTURY
Zohar Lederman, Yale Interdisciplinary Center for Bioethics, USA
[email protected]
“One Health Initiative”, “Echohealth”, and “One World One Health,” are
st
novel concepts\ paradigms\ initiatives in the 21 century which purport to
acknowledge and advance the inter-connectedness and inter-dependence
of human beings, animals, and the environment. Unequivocally, their aim
is to improve the well-being of all living creatures and the subsistence of
our environment. Recently, these varied projects have been receiving a
growing amount of attention and resources. However, at this time, no
one has examined the extent to which the actual practice of these
projects adheres with their aims and policy statements. Moreover, no one
has yet to assess the commensurability of these programs with existing
philosophical theories. These theories, such as Deep Ecology and
Biocentric Egalitarianism, have been discussed for many years in
environmental philosophy, and they seem to reverberate, mainly
subliminally, in the declared policy statements and aims of these projects.
Do the proponents of these programs view animals instrumentally? How
should we treat the environment? In this paper, I will provide an overview
of these different programs and examine whether their practice indeed
adheres with their proclaimed policies and goals. Next, I will briefly review
some relevant theories in environmental philosophy and assess whether
they parallel these varied projects. I suggest that a wholesome “ground”
theory is required to unite philosophy and practice, and recommend using
these philosophical theories in order to better understand one’s role in
caring for humans, animals, and the environment, and to ameliorate the
well-being of all.
THE USAGE OF BIO-MARKERS IN CLINICAL SETTINGS:
ETHICAL REFLECTIONS (OBSERVATIONS?)
1
1
1
Antonio Leo , Felice Francesco Carabellese , Federica Veneziani ,
Donatella La Tegola1, Caterina Bonfiglio2, Chiara Candelli1,
1
1
Roberto Catanesi , Giancarlo Logroscino
1
University of Bari, Italy
2
IRCCS De Bellis, Italy
[email protected], [email protected]
“Biomarkers” are quantifiable biological substances, characteristics, or
images that provide an indication of the biological state of an organism.
They also provide indications of both the potential effectiveness and the
potential hazard associated with a therapeutic intervention. In
neurodegenerative diseases biomarkers represent a promising approach
to staging the disease in order to identify clinical subgroups. Current
clinical research is focused on the use of biomarkers to improve early
detection of disease and pre-symptomatic detection of neuronal
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UNESCO Chair in Bioethics 9th World Conference
dysfunction. The ethical debate related to this topic stems from the
dichotomy between the principle of autonomy and the principle of
beneficence. The rights of ownership and the future use for research of
biological samples with an informed consent for actual use provided are
still an unresolved problem. However the binomial of research interests in
using this data with implications for the entire community, together with
the bioethical interest of constitutionally guaranteed rights protection has
to be taken into account. From this results the authors’ interest to suggest
methodologies for the accurate acquisition of consent that provide to the
patient detailed information on the aims, purposes and procedures of
biomarkers investigation. The purpose has been pursued by the draft of
an application format of information sheet and an informed consent.
They point out the possible value of biomarkers as early diagnosis and
monitoring tools in neurodegenerative diseases. This formats also clarify
that the identification in blood or CSF of some markers don't express a
definitive diagnosis and underline that, at present, their validity as disease
progression index is still uncertain.
DEVELOPING ETHICAL UNDERSTANDING AND DESIGNING
A RUBRIC TO MEASURE PROGRESS
Marie Catherine Letendre, Marymount International Rome, Italy and
Bioethics International
[email protected]
This paper examines both aspects of the question: “what constitutes deep
ethical understanding and how can we measure the progress of achieving
an ethical aptitude?”
The acquisition of moral reasoning skills by high school students,
undergraduate and graduate students is currently viewed as a necessary
and important skill set for preparation as knowledgeable citizens. We
have far too many examples of unethical choices on the part of
professionals and organizations and know well how such choices decrease
society’s trust and harm individuals. Faculty members and researchers
have initiated efforts in various disciplines to teach ethics and/or
bioethics, improve ethics awareness, and implement best practices in
developing ethical reasoning skills. There has been an enormous increase
in research articles in the last decade on empirical research in ethical
decision-making compared to the previous four decades.
However, the topic of designing a methodology for assessing students’
level of ethical achievement is currently not as robust. Admittedly, some
aspects of the moral reasoning process, namely reflection and the
ongoing adjustment of one’s beliefs, moral principles, values, and factual
information, can present significant difficulty. This paper will describe my
efforts to date to develop a rubric for advancing students’ moral
reasoning skills as well as to present examples for use as a framework for
educators to better determine what level of achievement is appropriate.
ETHICAL DIFFICULTIES IN NURSING, EDUCATIONAL NEEDS
AND ATTITUDES ABOUT USING ETHICS RESOURCES
C. Leuter, C. Petrucci, A. Mattei, G. Tabassi, L. Lancia, University of
L'Aquila, Italy
[email protected]
NursEthics. 2012 Nov 27. [Epub ahead of print]
Ethical difficulties arise in health-care practices. However, despite
extensive research findings that demonstrate that most nurses are
involved in recurrent ethical problems, institutions are not always able to
effectively support nursing care professionals. The limited availability of
ethics consultation services and traditional nursing training fails to meet
the frequent and strong requests by health workers to support their
ethical dilemmas. A questionnaire was administered to 374 nurses
attending a specialist training and a lifetime learning programme in Italy.
The respondents reported a high frequency of ethically sensitive
situations, and they described the poor development of ethics support
and a scarcity of ethics training programmes. The results suggest the
importance of promoting ethics services that include consultation and
ethics training. A need for systematic ethics educational activities was
identified for improving the capacity of nurses to manage ethical issues in
patient care.
PMID: 23186939 [PubMed – as supplied by publisher]
MEDICAL FUTILITY (MF) – DOCTOR'S POINT OF VIEW
MEDICAL FUTILITY IN ISRAEL HEALTH CARE SYSTEM 2013
Avi Levin, Tel Aviv Sourasky Medical Center, Israel
[email protected]
Background: While the concept of medical futility dates back to the
Hippocratic corpus, and over the years has evolved, futility still remains
elusive and controversial. Efforts are aimed at allowing physicians to use
their clinical judgment to determine whether a particular treatment
would be futile.
This study seeks to explore how Israeli doctors in a leading tertiary
medical center define medical futility and why some continue to provide
such care.
Methods: A 55 item questionnaire was self-completed by internal
medicine residents and attending physicians on medical futility: whether
they would provide a potentially futile treatment, what factors they
consider when judging the effectiveness of a certain treatment and how
often is this issue encountered in everyday practice.
Results: Of 95 responding physicians, the majority (72 %) deals with
futility on a daily basis. 52% stated that the patient's quality of life is the
central part of the concept and 55% believe that rendering such care is
not a violation of their code-of-ethics. Nearly half of the respondents
(48%) felt that guidelines are appropriate and required. 45% believed that
financing consideration is not a part of the futility conversation.
Surprisingly, 61% denied providing futile care due to defensive medicine.
Interestingly, 54% of physicians admitted providing futile care which they
would refuse as patients under similar circumstances.
Conclusion: Medical futility is not yet a firmly established concept among
Israeli doctors. Futile care is provided but for reasons other than
defensive medicine or cost savings, reasons that reflects the unique
characteristic of Israel's healthcare system.
DEVELOPMENT OF ETHICAL COMMITTEES IN THE CHINESE
HOSPITALS AND PROTECTION FOR THE PATIENT’S RIGHTS
Jining Li, Guangxi Medical College, China
[email protected]
The fast clinical development in modern society has led to various
bioethical problems. Our attentions are drawn to issues concerning
patient’s medical safety and dignity, and their entitlement to fair medical
services. The establishment of Ethic Committee in hospital provides
better protection to patient’s right of life and health. Formed between
late 80s and early 90s, Chinese Hospital Ethics Committee has made great
progress and its function has changed. From the beginning, the
Committee has been playing a role in enhancing medical ethics
construction, providing ethics education to medical practitioners,
reconciling medical conflicts, and conducting medical ethical assessment.
Nowadays, the Committee is also responsible for constructing and
supervising the medical ethical education of hospitals, and conducting
ethical review on bio-researches concerning human body, clinical trials
concerning medicine, medical instruments, human assisted reproductive
technology, researches on human embryonic stem cell, human organ
transplant technology, appliance of new medical technology in clinical
practice and etc. The existence of such organization keeps patients and
medical trail participants from illegal infringement.
MEDICAL INFORMATION IN A CHANGING WORLD:
PROVIDING INFORMATION VIA PHONE CALLS TO
RELATIVES OF HOSPITALIZED PATIENTS
Adi Liberty, Michal Itzhaki, Sheba Medical Center, Israel
[email protected]; [email protected]
The question of providing information to patients' relatives using "dated
methods", such as by answering phone calls, arises due to medical,
technological and social changes involving human rights.
The "morning sickness" affair of the pregnant British princess raised
awareness of the complexity of this issue. The nurse who provided
medical information on the phone realized that she had been cheated and
consequently committed suicide as she considered her act a serious legal
and ethical breach.
Abstracts of Oral Presentations
Similar issues are evident all over the world. In Israel, the Patient Rights
Act (1996) recognizes patients' rights to humane treatment and to
privacy. In 2003, the Israeli Ministry of Health issued a regulation
permitting health care providers to give information to the patient's
relatives as instructed by the patient in writing, but this regulation isn't
implemented in practice.
A survey of 180 Israeli registered nurses examined their knowledge and
perceptions of providing information to relatives on the phone. The
findings indicated that participants are not aware of this right and are not
familiar with the form required. When the caller identifies him/herself as
a therapist working at the same medical institution – nurses tend to
provide information, but they do not provide information on the phone to
anyone identifying themself as a patient's relative. Most of the nurses
expressed a wish for official instructions regarding the issue of providing
information over the phone.
WOMAN'S RIGHT TO ABORT A VIABLE FETUS
Pnina Lifshitz-Aviram, Israel
[email protected]
Late termination of pregnancy consists of, feticide followed by inducing
labor of an otherwise viable fetus, beyond 24 weeks of gestation.
The question remains, if the universal recognition of human rights, both
by the United Nation and by governments around the world, applies to
fetuses in their mothers' womb as well.
In Israel, termination of pregnancy at the viable stage requires, starting in
2007, the assembly of a specialized committee whose mandate is to
approve or reject the request for termination of pregnancy. Surprisingly,
since the development of these committees in 2007, no significant
changes in rates of approval were noticed. This may raise concerns
regarding the keeping of the rights of the fetus, as those may come in
contradiction to the parental wishes.
Is the fetus a human being, and as such, when is it entitled to human
rights, is an important question. As a human being, it has the right for
moral and legal protection, even from its parents. Some of its rights are
already being considered, by the mere existence special committees in
order to terminate the pregnancy. Other rights are less defined, thus not
protected at all.
The modern technology used today conveys great knowledge about the
developing fetus, some of which of diagnostic nature, and some of
statistical nature. This knowledge may be significant for parents, as they
might not want to give birth to an anomalous newborn. Prenatal
diagnosis begets expectation, which may lead to the proliferation of
requests regarding termination of pregnancy.
HAVING A CHILD AFTER DEATH: REPRODUCTIVE RIGHTS,
CHILDREN'S INTERESTS AND THE REGULATION OF
TECHNOLOGIES
Yun-hsien Diana Lin, National Tsing Hua University, Taiwan
[email protected]
In 2005, a Taiwanese military officer, Chi-hsiang Sun, died from an
accident. His fiancée, Ms. Li, required Officer Sun’s sperm to be retrieved
so as to bear his child through artificial insemination. The Taiwan
Department of Health gave permission to the extraction of sperm but
later opposed to the posthumous reproduction. The sperm was finally
destroyed. In 2007, the Taiwan Artificial Reproduction Act responded to
instances of posthumous reproduction in a forbidding fashion. This article
will argue that the blanket regulation is overly broad that it may impose
substantial obstacle to an individual’s autonomy in procreation, which
should be narrowly tailored under consideration of all the competing
interests.
Firstly, models of regulation from the restrictive to the permissive
approach will be discussed in light of protecting the procreative autonomy
of the deceased. Next, since the assisted reproductive technologies will be
performed upon the surviving spouse, she will need comprehensive
consultation in order to make autonomous choices. The contents, goals,
methodologies of such consultation and the system of collaboration and
referral will be the main concern. Lastly, the best interests of the resulting
child must be given due consideration. To reduce the uncertainty and
potential risks, issues of legal parentage and inheritance will be explored.
This article will conclude by proposing a comprehensive framework of
105
regulation where interests of the deceased, the surviving spouse, the
resulting child and social justice will be balanced.
DEVELOPING NEW/REFORMED PSYCHIATRIC SERVICES –
WHAT SHOULD BE THE PRIMARY TARGET?
Muli Linder, Lev-Hasharon Mental Health Center, Israel
[email protected]
Creating a new set of psychiatric services is not a routine procedure. In
fact, it is a process that might not happen for decades, and when it does,
it affects lives of an incredible number of people, patients and
professionals. It involves politics, worldviews, values and money. It
requires legislation, budgets and time.
When a ministry of health and the insuring organizations are planning
such a dramatic move, they are expected to determine the standards of
care, first. This phase is when different points of view might collide, and
ethical issues may emerge.
A close looks on three different mental health systems (Britain, Italian and
Dutch) reveals some of these points of view, showing that standards of
care are not similarly prioritized in different countries.
What are the reasons for these differences? Population size? Culture?
Money? should these factors play a role when trying to determine
standards of care while addressing the ethical codes of health and mental
health?
Israel is going through a reform in its mental health services. The main
issue is transferring the responsibility on MH services from the state to
the HMOs, just like most other medical services in Israel. What are the
opportunities that come along with the changes? Are we violating any
unwritten ethical code by changing the "contract" between the state and
the patient?
Some of the uncertainties will be presented, along with some of the steps
taken so far, after the first out of tree years given to complete the reform.
HUMAN ORGAN TRANSPLANTATION IN SINGAPORE
1
2
Y.H. Liow , K.H. Koh
Temasek Polytechnic, Singapore
2
Tampines Polyclinic, Singapore
[email protected], [email protected]
1
The Human Organ Transplant Act (HOTA) in Singapore was enacted for
the removal of kidneys for the sole purpose of transplantation from
deaths arising from accidents under a system of presumed consent. Since
then, it has undergone a series of major amendments to include the
recovery of the liver, heart and cornea in the event of deaths from nonaccidental causes, and to make provisions for the inclusion of Muslims
and the removal of the upper age limit of 60 years old to increase the
number of donors. Recent amendments to this law have also included the
regulation of living donor organ transplantation and the more
controversial reimbursement of organ donors for their loss of earnings
and expenses pertaining to the transplantation. The purpose of this paper
is twofold. It traces the historical developments in Singapore that led to
the adoption of an approach in presuming the consent of individuals in
donating his organs upon death. In doing so, it addresses the challenges
that a policy of presumed consent to organ transplantation has
presented. Next, we review an instance in Singapore’s legal history in
which the strict prohibition on financial compensation for organ
transplantation was tested. Here, the legal justifications behind the
court’s decision will be discussed in tandem with the prevailing theme of
exploitation of the poor and socially disadvantaged.
AN ETHIC OF RESPONSIBILITY FOR MANAGING
END-OF-LIFE PROCESSES
Giuseppe Lissa, Italy
Few decades ago, Hans Jonas easily became a prophet a few, when he
argued that, in the face of the mutations produced, in each field, by
developments in scientific knowledge and their technological applications,
there would be need more and more of an ethic of responsibility to the new
type to address the great moral issues with which humanity should have
been compared.
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UNESCO Chair in Bioethics 9th World Conference
This prediction appeared particularly good in the field of medicine, where,
as well as Hans Jonas had foreseen, the most shocking changes had already
occurred in recent decades. Here we must point out that if these changes
have affected every aspect of life, from its conception to its rise and its
develop, they have particularly affected and transformed the paths of the
last stage of life the ones who generally are precisely called end-of-life
processes.
Medical knowledge has allowed a significant lengthening of lifespan. In this
context the diseases of old age have gradually put more and more relevant
issues, launching unprecedented challenges to ethical reflection applied to
the great questions of life. You can, without fear of being proven wrong,
claim that in this landscape the issues related to serious diseases have
imposed with increasing clarity some problems that stand out for ethics and
vital importance on all others. I mean to risk, from those who practiced
medicine, of falling, in the case of serious diseases, often extreme, in the
practice of a life-prolonging treatment that acts as a counterbalance to the
request from the patient, subjected to the pressure of a suffering growing
up on the edge of the unbearable, to make use, with the assistance of the
physician, of euthanasia’s practices.
An ethic of responsibility is an ethical decision first of all pro-life. An ethic of
this kind would be an ethic for life. But how can consistently be when the
situation with which we must deal causes ethical agents in the field, the
doctor, the patient and the family background and the company, are to be
tossed between the opposing demands of having to avoid therapeutic fury
in all its forms without using euthanasia’s practices.
As it is known, the therapeutic fury can, according to the doctors, be
conjugated in three ways: therapeutic fury, diagnostic fury, experimental
fury. What is the note that unites these three behaviors? In each of them
you can, using the categories suggested by the great Jewish thinker Martin
Buber, attach a report I-it or to speak in terms of Cartesian-Kantian, subjectobject. The doctor that investigates, experiments or that cure is always the
epistemological subject. The body of the sick is the field of investigation,
experimentation, operative intervention. It is a structural feature of the
relationship. “Structural” means inevitable. The feature will be always more
inevitable, as the medicine will become more experimental and scientific.
Unfortunately as many of the structure analysis have shown what the “I”
investigates, experiences and on which intervenes to operate is what it
exerts its grip. When you try to know something, you try to grab it.
Inevitably in knowing the will to power works, that will to power that, as
Spinoza already knew, is inherent to the creation of the modern subject.
This means that in managing end-of-life processes can take in the medical,
medical apparatus called in to handle them, the temptation to pursue a will
to power. A will to power that actually works when the doctor's ethical
values prevail on the process. For this the patient-physician relationship is
ambiguous, because one the one hand it is a relationship “I-It”, subjectobject, on the other hand it is eminently a relationship I-You.
How can we manage the relationship as a relationship I-You? Do we
necessarily have to follow the given that, as all the modern and
contemporary thought supported, where I meet a Tu, where freedom is
facing another freedom, conflict arises, as Hegel and with him all the major
thinkers until Sartre included? Levinas’ studies have shown that in the
encounter I-You the spark of peace can take if I abdicates his liberty and
transforms this freedom in responsibility for each other, better yet in
responsibility of the liberty of another. The ethic of responsibility that
Lévinas proposes is not easily manageable. But can you at least, in the fix
where one moves (doctors don't know how to define the fury, experimental
or therapeutic, diagnostic, and the sick, stimulated by an uncompromising
liberalism, demands, sometimes, to be freed from their sufferings even
peremptorily by requiring physicians be unreasonable practices, in contrast
with the values they believe) reflect on the possibility that in the
management of end-of-life processes your doctor avoiding the traps that
are strained by the will to power, can responsibly become Manager of the
patient's freedom to orient it toward a more humane solution of problems
raised by end-of-life processes, also in relation to the needs of the family
and of the society that the background exert a substantial feature on them?
An ethic of responsibility for managing end-of-life processes.
INFORMED CONSENT & ADVANCE DIRECTIVES FOR
TREATMENT
Roberto Longhin, Italy
[email protected]
The problems related to Advance Health Care Directives have recently
been the subject of extended confrontation in the Italian Parliament, also
in the light of the passionate debate which has animated public opinion.
In consideration of the consolidated position of jurisprudence on the topic
of informed consent, the underlying problems of Advance Health Care
Directives in the Italian juridical culture appear to be even more complex.
We are faced, in particular, with the difficulty of defining the right context
of cases such as “biological wills”, “living wills” and “health care proxies”
both in terms of their suitability and their limits. Dealing with the question
of the need for, or uselessness of specific regulations in this field is of
great importance.
THE RIGHT TO BE BORN HEALTHY IN THE LIGHT OF
THE SUPREME COURT’S JUDGMENT N. 16754
OF THE 02.10.2012
Marianna Longo, Filomena Casella, Marisanta Colucci, Daniela Maria
Taccagna, Raffaele Landi, Second University of Naples, Italy
[email protected]
In the light of its in-depth analysis of the judgment of the Supreme Court
Civil No. 16754 of 02/10/12 we wanted to address the issue of the rights
of the unborn child including the right to be born healthy.
The sentence in question for the first time recognizes to the baby the
right to seek compensation for damage to the doctor that negligently
failed to inform the mother of the limits of predictive test which had
undergone.
The compensation covers the damage done to his person to be forced to
live a life of person with significant limitations to his abilities.
The sentence can be defined as historical because it recognizes the right
of the unborn to be protected from any losses caused by negligent
conduct carried out by medicals.
BIOETHICAL REGULATION IN A PLURALISTIC SOCIETY
Paweł Łuków, Steering Committee, Polish Unit of the International
Network of the UNESCO Chair in Bioethics, University of Warsaw;
Medical University of Warsaw, Poland
[email protected]
According to a common view, bioethical law should reflect a possibly wide
spectrum of philosophical, ethical, religious and other outlooks. The key
idea used by the supporters of this view is that of representation of
different worldviews in the process of legislation which concerns
important bioethical issues. The result of such process is to be a legal
compromise or modus vivendi, in which different worldviews are
represented to the highest possible degree, as can be seen in many
legislations concerning abortion or infertility treatment. However, the
idea of representation of a worldview does not allow for an easy
interpretation within the framework of the ideals and values of a
pluralistic democratic society. Popular interpretations of that idea – which
can be found, inter alia, in official statements of religious groups on
abortion or euthanasia – are either incompatible with the ideals and
values constitutive for a democratic society, or they misconstrue the role
of the member of a legislative body. What is more, even if a plausible
interpretation of the idea of representation of a worldview could be
found, legislation based on that idea would have to be seen as little more
than the result of a current balance of political power.
It will be argued that in order to avoid these consequences, worldviews
should not be seen as represented in bioethical legislation but as
reservoirs of moral ideas and arguments which are to be used in a
democratic bioethical debate. The acceptability of those ideas and
arguments as foundation for bioethical law should be evaluated with the
ideals and values of a democratic society. On this view, the resulting
legislation is not a compromise or modus vivendi but a widely acceptable
interpretation of the ideals and values of a democratic society.
THE ETHICS OF THE VERI CHIP HUMAN IMPLANT
Michael Lupton, Bond University, Australia
[email protected]
What is the Veri Chip Human Implant?
It is a glass-encapsulated RFID microchip (a radio frequency identification).
The chip is designed for implantation in the human body. It is about the size
Abstracts of Oral Presentations
of a grain of rice and it is surgically implanted under the skin of its bearer,
typically on the back of the arm.
The Veri Chip consists of a Radio Frequency Identification or ‘RFID’
integrated circuit, a capacitor and an antenna wrapped around a ferrite
core. These components are sealed in a capsule of medical-grade glass
which in turn is coated with a porous polypropylene substance called
Biobond to prevent the device from migrating within the body.
How is it implanted?
The Veri Chip implantation is an outpatient procedure that takes 15 minutes
or less and can be done in a doctor’s office, in a convention booth or even in
a night club. The only equipment required is an alcohol swab, a local
injection followed by a 12 gauge, preloaded hypodermic syringe known as a
cannula. The latter is inserted into flesh and depressed. This releases the
implant into the subcutaneous tissue.
What is the purpose of the Veri Chip and how does it work?
It is marketed as a device to control access to secure facilities, as a payment
device and as a method of accessing medical records in an emergency. We
will focus on the legal and ethical issues relating to the latter.
The Veri Chip cannot be lost, stolen or misplaced and in a healthcare setting
it can help identify an incapacitated or disoriented patient whose identity is
difficult to establish. Once the person’s identity is clear the medical facility
can access the corresponding database records through an access controlled
web-based interface and dispense the appropriate medications and
treatment to the patient.
The implant contains only a unique 16 digit identification number, similar to
a social security number. The chip is read via a Veri Chip scanner. When the
scanner is brought within range of the implant, the scanner emits a radio
signal that stimulates the implant causing it to emit its own radio signal in
response. The scanner picks up the signal and converts it into the unique 16
digit identification.
The scanned 16 digit identification which allows access to the patient’s
medical records will also facilitate automated registration in the event of a
patient arriving at the hospital unconscious.
The legal and ethical issues raised by the Veri Chip
The first and obvious issues that come to mind are issues of breach of
privacy and informed consent.
Is a dementia patient who is to be tagged to improve ‘wander control’
capable of giving an informed consent? Should prisoners and immigrants be
coerced into being implanted? Should parents be allowed to have a Veri Kid
implanted in their children to monitor their movements?
If the Veri Chip application is used to identify a patient it will probably pass
the standard ethical test for medical treatment viz does it cause any harm or
does it have a therapeutic outcome.
However, issues surrounding the privacy of the information contained on
Veri Chips given that they can be spoofed needs to be addressed by the
manufacturers. The current implantation of Alzheimer’s sufferers without
proper consent is downright unethical and also needs to be addressed.
Given reports of patients with Veri Chip implants developing subcutaneous
sarcomas, malignant tumours, most of which have encased the implants
means that there are also ethical issues relating to safety which are at stake.
SCIENTOMETRICAL STUDIES ON HOT TOPICS AND
RESEARCH STRUCTURES OF CHINESE MEDICAL ETHICS IN
RECENT 20 YEARS
Yanhua Lv (PhD Candidate)1, Hongqi Wang1,2,3, Zhiguang Duan1,4
1
Shanxi Medical University, China
2
Chinese Medical Ethics Committee, China
3
Shanxi Medical Ethics Committee, China
4
Journal of Medicine & Philosophy
[email protected], [email protected],
[email protected]* (corresponding author)
Basing on the 28722 keywords from the 5783 literatures on medical ethics
researches in China, we take the top 50 high-frequency keywords as main
objectives to explore the hot topics and the research trends in this field
during 1993-2012, by employing the methods of Word-frequency
Analysis, Co-word Analysis, Multi-dimensional Scaling (MDS) and M-Slice
techniques, the results of which are consequently visualized by Pajek.
Three main research fields – Fundamental research, Traditional Chinese
Medicine Ethics Research and Institutional Review Board for Biomedical
Researches Involving Human Subjects – are found having been
established in the present relevant research field of China. Although the
microstructures are well-formed and stable, the macro-structures are not
perfect yet. Moreover, some areas have not yet been involved in the
107
given research and they need further exploration. The research is
expected to help relevant researchers to understand the relevant
research subjects and policy-making better.
THE ETHICS OF RESEARCH IN PALLIATIVE CARE IN AN HIV
HOMELESS COMMUNITY IN SOUTH AFRICA
Therese Maarschalk, Worldwide Travel Medical Consultants, South Africa
[email protected]
Palliative care for HIV sufferers in a homeless community is an unusual
concept. Where life and death are the basic norms in the survival of
street-living, who would care for the rights of this vulnerable population:
the destitute dying of HIV?
In the heart of Johannesburg, one of Africa’s largest cities, is Hillbrow, the
inner city suburb where approximately 800 000 people reside in less than
one square kilometre and is characterised by crime and social problems
with many illegal immigrants.
Metro Evangelical Services (MES) is a social upliftment NGO working in
the inner city of Johannesburg, South Africa. Part of their service is a Care
Centre for HIV patients rendering palliative care where the concept
combines dedicated antiretroviral treatment (ART) with patient-specific
palliative care for advanced symptoms.
Research was done to determine the needs and expectations for palliative
care in an HIV Care Centre. Demographic data was collected from new
admissions to the HIV Care Centre followed by a questionnaire comprising
of the different aspects of palliative care (physical, psychosocial and
spiritual) with anonymity and informed consent prevailing. The questions
distinguished between ‘need for’ and ‘expectation of’ palliative care. The
majority of the responders were female and more than half was younger
than 30 years old, fitting in with alarming national HIV statistics.
Results revealed little need for pain and symptom relief, but a huge
expectation for pain and symptom relief, and especially for ART. Results
will be discussed with specific reference to patient autonomy,
beneficence, non-maleficence and justice.
MEDICAL TREATMENT OF CHILDREN AND PARENTAL
CONSENT IN IRELAND
Deirdre Madden, University College Cork; Chairperson, National Consent
Advisory Group, Ireland
[email protected]
In 2013 the Health Service Executive in Ireland will publish a new National
Consent Policy for all service providers in health and social care which
aims to provide guidance to service providers regarding how to obtain a
valid and genuine consent in health and social care and also to provide
guidance to service users regarding the provision or refusal of consent by
them as partners in their own care. The policy was developed by a multidisciplinary expert group chaired by the author of this paper.
The policy tackled many difficult issues across the spectrum of health and
social care but this paper will address two of the challenges dealt with in
the new policy in relation to children and minors, firstly whether single or
dual parental consent is required under Irish or European law; and
secondly, how the law should strike an appropriate balance between the
protection of the interests of minors who seek contraceptive treatment
without their parents’ knowledge and the obligation on medical
practitioners to report underage sexual activity to appropriate authorities.
Both of these issues are particularly problematic in Irish law as parents
have strong constitutional rights to make decisions regarding the welfare
of their children.
INDIVIDUAL COUNSELING AS EFFICACIOUS STRATEGY FOR
ERADICATION OF FEMALE GENITAL MUTILATION (FGM) IN
IMMIGRANT WOMEN LIVING IN SOUTH ITALY
Rita Maffei, Luciano Gualdieri, Ascalesi Hospital – ASL Napoli 1 Centro,
Italy
[email protected]
World Health Organization has declared that Female genital mutilation
(FGM) is violations of girls’ and women’ human rights and almost all
nations have subscribed this principle. This phenomenon is present
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UNESCO Chair in Bioethics 9th World Conference
among women immigrated in South Italy and arriving from countries
where the FGM practice is usual. We conduct a study in 134 immigrant
women with FGM living in Naples to verify their clinic conditions and their
will to carry the FGM practice also with their daughters and/or nephews,
to analyze the consequences on their sexuality and their motivation in
keeping alive this practice.
The results of this survey show that the FGM practice is still well present
and consolidated among the African population. In most of the cases
sexuality is not compromised and in only one case the person asked a
plastic surgery reconstruction. Thirteen different motivations for the
application of the FGM have been reported globally by the interviewed
women. In 10 cases, the mother, less than 35 years old, has agreed to put
her daughter through FGM practice in her origin country.
In our experience the intensive personal counseling with professional
operators gives better results for eradication of this practice among
immigrant women rather than with actions on population groups because
only the clarification on the motivations can change the behavior.
• Nurses and doctors in each department were appointed coordinators
of risk management.
• 10 quality control committees were formed
• Each department underwent risk management training using case
studies, real-time documentation, steps to minimize damage to
patients and recurrence prevention.
• Importance of reporting was discussed.
• Prioritization of events, studying them, reaching conclusions and
implementing lessons.
Training new and veteran employees: In 2011, 1882 doctors and nurses
received training, as did 1077 hospital employees in 2012.
Results: After 2 years of intensive training, 834 self-reports were made,
and 222 risk files prepared, a 200% increase.
In 2012, 958 events were reported and 250 risk files prepared, with
significantly increased self-reporting from physicians. Employee
compliance with self-reporting potential errors in order to ensure patient
safety has increased significantly.
PROTECTING OR POLICING? RESEARCHERS' VIEWS OF IRB
CHALLENGES TO THEIR RESEARCH
ABOUT NURSES KNOWLEDGE OF MEDICAL DEONTOLOGY
Jihad Makhoul1, Rima Nakkash1, Khalid Al Ali2, Farah Mazloum1,
Yara Qutteina2, Catherine Nasrallah2
1
American University of Beirut, Lebanon
2
Qatar University, Qatar
[email protected]
A recent surge of public and private research institutes and the rise in
funding for research involving human subjects in the Arab world pose
concerns about research ethics. A small number of studies assessing the
practice of research ethics in the Eastern Mediterranean Region point to
several gaps in practice. This study aims to explore the challenges to
ethical practices in research involving human subjects from the
perspectives of researchers undertaking social-behavioral and biomedical
research at universities in Lebanon and Qatar. In-depth interviews with 40
researchers were conducted around common practices, barriers and
capacity for research. Checklist data were collected from IRB staff in all
the universities where they exist in both countries.
Findings from the checklist data point out that these IRBs score high in
their processes, operations and constitution. However, preliminary
findings from the interviews indicate that the majority of IRBs are not
transparent in their dealings, lack effective communication, are
understaffed and some have inexperienced reviewers. Consequently,
according to the participants, oversight processes may hinder their
research through delays and unnecessary demands. Other challenges
reported pertain to the difficulty of applying ethical demands following a
Eurocentric approach in an Arab culture, or a biomedical approach to
social-behavioral research. Practical implications are discussed and
include the need for IRBs to assume not only an oversight role to protect
research participants from harm, but also an educational role for
researchers.
RAISING THE AWARENESS OF ERROR REPORTING AS PART
OF ORGANIZATIONAL CULTURE AND PATIENT SAFETY
Helen Malka-Zeevi, Barhoum Masad, Western Galilee Medical Center
Nahariya, Israel
[email protected]
Western Galilee Hospital, a large Israeli medical center with 2300
employees, has developed a system whereby events posing high risk to
patients are identified early, gravity assessed and recurrence prevented.
Risk minimization is a highest priority, through study of each event and
emphasizing procedures to improve patient safety.
The problem: An impossibly small number of errors were reported. In
2008, 515 events were reported, 90% of them patient falls. Few reports
were made on medication or blood transfusion errors, or on other
damage to patients during hospitalization. Most reports were from
nurses; non-reporting was due to fear of rebuke from the hospital
administration.
Intervention plan
• Policy of openness and discussion to rectify the problem rather than
punishing the error.
Dilara Mamedaliyeva, Baku Base Medical College № 2, Ministry of Health,
Azerbaijan
[email protected]
Protection of health and life of population is one of the main objectives of
the government. Ministry of Health is the governmental structure
responsible for elaboration and implementation of state policy aimed to
protection of health of the people and development of health
infrastructure and equipment. This is well known that solution of many
social problems related with medical issues depend on attitude not only
health authorities and medical doctors but also from nurses who have
crucial role in providing medical-social aid to patients. The nurse must be
careful when doing his/her’s obligations and must be systematically
trained how to do it in a best way.
According to our classic deontology taught to the future nurses the nurse
must be patient and smiling. The diagnosis can’t be discussed near the
patient. It is forbidden to approach the doctor’s treatment with doubt.
The nurse’s professional activities are assessed by her aid’s quality. High
quality exists in cases when nurse helps patient to overcome his psychoemotional problems and to believe to full recovery. The nurse must
respect the honor and dignity of the patient being very kind and
intelligent. Nurse must be also discreet with patients’ relatives explaining
details of severe patient’s condition. At the same time he/she should be
careful speaking with patients’ relatives about signs of diseases. The nurse
must answer all the questions patiently and carefully.
In relations with the doctors nurse can’t be rude and disrespectful. The
doctor’s timetables and prescriptions should be implemented correct and
professional. If the patient’s condition is changed doctor must be
immediately informed. If some problems arise the doctor and nurse must
discuss it not in the presence of the patient.
The nurses must be modest, respectful and polite with each other. They
must help each other in hard conditions. An experienced nurse must be
kind with junior personal and pay great attention to them. It is not
permitted to scold juniors in front of the patients and their visitors.
WHY WE NEED TO STRENGTHEN CONTROL ON GMO
FOOD PRODUCTS TURNOVER
Vugar Mammadov, Institute of Human Rights, National Academy of
Sciences, Azerbaijan
[email protected]
Many scientists consider genetically modified food products (GMOproducts) as potential threat to humanity. Genetic engineering has few
decades history. To assess how GMO products affect the environment
and human health in such short time is difficult. Behavior of new genes in
open ecosystems, their response to parasites, diseases is completely
unpredictable. Many scientists believe that GMOs may be hazardous to
the environment. Propagation of transgens threatens, at least, the natural
biodiversity in nature, as well as human health. In the Universal
declaration on bioethics and the human rights, accepted by UNESCO, in
2005, in article 17 Protection of environment, biosphere and a
biodiversity it is specified that it is necessary to give proper attention of
correlation between the person and other forms of life, importance of
Abstracts of Oral Presentations
appropriate access to biological and genetic resources and their usages,
to respect of traditional knowledge and a role of the person in protection
of environment, biosphere and a biodiversity.
The first transgenic products have been developed by "Monsanto" (USA).
The first fits of transgene cereals have been made in 1988, and in 1993
the first products with GMO components have appeared on sale. In the
Russian market transgenic products appeared in the late 90s: rice,
soybean, corn, wheat, potatoes and others. Many scientists have linked
the increase of allergic reactions, food poisoning, mutations, lowering
immunity and resistance to antibiotics is to GMO. Scientists cannot
exclude the possibility that foreign DNA can accumulate in the internal
organs of man, and get into the nuclei of cells of embryos, which can lead
to birth defects and even fetal death.
In Europe has long been a norm GMO content in foods – not more than
0.9%, Japan – 5% in the U.S. – 10%. And in many countries, labeling of
GMOs is strictly reserved. In Europe, production has already appeared
labeled «organic», which is environmentally friendly and is subject to
strict production control. In Russia, Ukraine, Kazakhstan decrees are
issued that all imported food products containing genetically modified
ingredients must be labeled accordingly. In Turkmenistan such products
turnover in the country is totally forbidden.
Manufacture, import and turnover of GMO products in the territory of
Azerbaijan is carried out nowadays on the free basis. More than 80 % of
various sorts of a potato are grown up on genetically modified basis, 90%
of sorts of tomatoes are products with GMO. The majority of types of a
beet and corn are subject to the same fate. Such situation grows out of
gaps of the national legislation which needs improvement. At the given
stage there is a bill of manufacture and use GМО which is on arguing in
parliament. Azerbaijan Unit, UNESCO Chair in Bioethics and Human Rights
Institute has submitted recommendations to National Parliament to
strengthen control on turnover of GMO food products in our territory.
RIGHT FOR HEALTH PROTECTION IN CIS COUNTRIES
CONSTITUTIONS
Vugar Mammadov, Aytan Mustafayeva, Fatima Aliyeva,
Institute of Human Rights, National Academy of Sciences, Azerbaijan
[email protected]
Right for health protection is reflected in constitutions of all CIS countries
and guaranteed by the State in most of them. The Constitution of Russia
Federation declares of establishment of social state due to Article 7.
Protection of health, the right to free medical care in state and municipal
institutions is guaranteed by the State and determined by Article 41 of
Constitution.
The Constitution of Azerbaijan Republic applies the right on protection of
health as guaranteed by the state. State takes responsibility for
implementing measures in order to develop various types of high level
healthcare system in state and private medical institutions, sanitary-andepidemiologic well-being, to create conditions for development various
forms of the medical insurance.
The Constitution of Belarus Republic guarantees the right for health
protection for the citizens of Republic, including free medical treatment in
state healthcare institutions.
The Constitution of Georgia Republic declares the right of using health
insurance as means of medical service of every citizen of the country. It is
determined to have free medical service in concrete situations as applied
in the Constitution.
The Constitution of Kazakstan Republic intends to have free medical
service in the guaranteed form, at the same time the right of using paying
medical service in state and private healthcare institutions.
Thus, the countries of CIS including Azerbaijan learn the advanced
practice of the developed Western European countries. In this countries
state regulation, giving compulsory health guarantee to every citizen,
control on realization of this Right by state, protection of the citizens, at
the same time double principle about the right to protection of health by
the way of establishment additional medical service opportunity forms
unity. This makes CIS countries situation different from American realities
where USA Constitution does not envisage guaranteeing right for health
protection.
109
PATIENTS’ RIGHTS AS AN INDICATOR OF HEALTH SYSTEM
DEVELOPMENT
1
2
2
Vugar Mammadov , Fidan Rustamova , Aris Rustamov
1
Institute of Human Rights, National Academy of Sciences, Azerbaijan
2
Ministry of Health of Azerbaijan
[email protected]
The focus on a patient's quality of life has increased greatly during the
past twenty years in Azerbaijan. Healthcare issues receive great attention
in the country, as health and human life are the main universal values.
Patients’ rights are of priority in Azerbaijan health care system. However,
patients may belong to various groups of population. Some of them are
incompetent. From this point of view their rights demand close attention.
Azerbaijan's rising economy made it possible for Azerbaijan’s government
to provide full support of the health care system’s infrastructure. Health
facilities built and reconstructed in Azerbaijan over the past few years
reflect the realities of the present-day Azerbaijan. The expanding budget
has allowed the Government of Azerbaijan to allocate more resources to
the social sector. Allocations to health, education and social protection
and security have risen. The National Concept on Health Financing
Reform, signed by the President in January 2008, followed by the Cabinet
of Ministers’ Approval of the Action Plan to Introduce Health Financing
Reforms, defined a state guaranteed basic benefit package of services as
part of reforms underpinning the introduction of mandatory health
insurance: “the basic benefit package will include all primary, preventive
and public health services such as primary health care, emergency care
and the services of certain types of specialists and will be financed
through the state budget and mandatory health insurance contributions.
Supplementary services will be financed through the population’s own
resources, voluntary health insurance and different financial aids.”
It is important to emphasize that health outcomes are not only dependent
on how well the health system functions; there are also other factors that
have to be taken into consideration. One of such main points is providing
and protection of patients’ rights which allows to carry out necessary
medical care. Patients’ rights in Azerbaijan are protected by the
Constitution. Access to health care is a constitutional right of every citizen
of Azerbaijan. Continuous improvement of the legislation allows to
expand patients’ rights and to harmonize the national legislation with the
international rules of law. Law on the Protection of the Health of the
Population points to basic rights of the patient, such as voluntary consent
to medical intervention, refusal of medical intervention, equal rights for
everyone etc. Special point provides situation about violation of rights.
Another important issue is informed consent. Palliative care for patients is
also one of vital issues in national health care system.
IN SEARCH OF SALIENCE: PHENOMENOLOGICAL ANALYSIS
OF MORAL DISTRESS
Duilio Manara, Giulia Villa, Dina Moranda, School of Nursing Vita-Salute
San Raffaele University, Italy
[email protected]
Background: Literature offers many indications about different ethical
problems related to clinical nursing. However, the nurse's moral
competences in the management of situations which present ethical
implications are less investigated. Phenomenology affirms that emotional
reception is the first fundamental attitude as well as the premise of any
ethical reasoning. Nevertheless, it is not clear how and when this could be
confirmed in situations where the effect of emotions on the nurse's
decisional process is not clear.
Aim: to explore the processes through which situations of moral distress
are determined for the nurses involved in nursing situations.
Materials and Methods: a phenomenological-hermeneutic analysis of a
nurse's report of an experience lived by her as a moral distress situation
has been conducted.
Results: Perception of the ethical dimension of a nursing situation is
determined through the attention of its emotional elements. Nursing
assistance emerges as a relational doctrine that requires the nurse to have
different degrees of personal involvement, the integration between logicformal thinking and narrative thinking, the perception of the salience of
the given situation also through the interpretation and management of
one's own emotions and, finally, the capacity to undergo a process of
research and co-construction of shared meanings that the others might
consider adequate for the resolution of his/her problem.
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UNESCO Chair in Bioethics 9th World Conference
Discussion: Moral action requires the nurse to think constantly about the
important things that are happening in a nursing situation. Commitment
towards practical situations is directed to training, in order to promote the
nurse's reflective ability towards finding salience in nursing situations, but
it is also directed to the management of nursing assistance and human
resources for the initial impact that this reflexive ability has on patients
and their families' lives and on their need to be heard and assisted.
Limitations: the only case analysed does not allow generalizations.
Further research is needed to investigate how feelings generated by
emotional acceptance influence ethical decision making and moral
distress in nursing situations.
a-typical stakeholders. On this basis, I propose a model of evaluation, that
is qualitative and quantitative, of ethics sustainability of the companies
operating in the area of bioculture and, on a political level, proposals for
support legislation.
SOCIOLOGICAL MODEL OF DONATION
Growing data confirm that early traumatic events play a major role in the
pathogenesis of mental and physical disorders. Early traumatic
events include all kind of the repeated experiences of unsuccessful
protection by the caregivers during the development. Examples of
relational traumas are both: those in which parents are violent and
frightening and, those in which parents are absent and/or neglecting the
basic needs of comfort, protection and emotional regulation. If repeated,
in the different stages of development, all kinds of early traumatic
events could increase their pathogenic risk. In this view the separation of
parents, especially if it occurs in a conflicting and hostile condition, could
represent a traumatizing event and a risk-factor for developing emotional
and physical disorders.
Giulia Mancini, Italy
This Analysis reflects the problem about the critical need for organ
donors.
The number of persons waiting for a transplant has reached an increase.
There are a lot of differences among the countries:
• there are financial obstacles to access to transplant in some countries,
an example is what is happen in the USA
• there are also cultural obstacles between who believe that become
donors is a duty, is a responsibility for the society and who believe in a
utilitaristic vision of organ donation.
• There are organization obstacles to connect the different supply areas
in the same nation.
The study looks what kind of variables influence organ donation, through
the articles, websites and by using interviews we are highlight some
significant variables, that today play a main roles between donors and
recipients.
Final goal is to start to think about global platform where the
communication and the exchange will be fast through a same legal and
social organization.
IN TIME AND SPACE LOCKED-IN:
FAMILIES FACE VEGETATIVE STATE
Marina Manera, V. Percivalle, Ines Giorgi, Italy
[email protected]
Vegetative state represents a breakdown of the individual development
which involves important changes in the family context. The
consequences of this condition on the patient’s relatives are distress,
depression and anxiety, impaired quality of life and social isolation.
Several studies showed the importance of a multidisciplinary approach
which includes patient’s family in order to manage caregivers’ burden.
FOR A NEW ETHICS AND POLITICS OF BIOCULTURE
Franco Manti, University of Genoa, Italy
[email protected]
Moral and political issues, about our relationship with the ecosystem and
with biotic communities that inhabit, require an approach that considers
the entire ecosystem as a result of a process co-evolutionary (still in
place), that involves the biotic communities and individuals components
of these. So we need a new ethics of bioculture that – starting from the
assumption, by the homo sapiens, the moral responsibility of the
ecological impact of his activity and the using, to his own ends, of nonhuman animals – enables, on the basis of common values, to take realistic
policy decisions.
Bioculture means the set of institutions, social practices and organized
activities in which humans systematically exploit animals. The ethics of
bioculture, therefore, has two focuses: 1. The problems posed by the
handling of animals under conditions of bioculture 2. The relationship
between bioculture and biosphere.
Taking seriously an ethical approach to bioculture means questioning
patterns of domestication, exploitation of animals and reconsider models
of development, agricultural policies, animal husbandry, environmental
together with our well-being understanding.
A new approach to ethics of bioculture may be possible taking into
account the requests and tools of Corporate Social Responsibility (CSR)
and an interpretation of stakeholder theory that considers the animals as
PARENTAL CONFLICTUAL SEPARATION AS AN EARLY
TRAUMATIC EVENT FOR CHILD
Maria Giuseppina Mantione, Alessandra Muscetta, School of Cognitive
Psychotherapy (SPC), Italy
[email protected]
BIOETHICS AND THE CENTRALITY OF THE PERSON:
THE CORRECT MEDICINE APPROACH RETIREMENT
D. Marchetti, Università Cattolica del Sacro Cuore, Italy
[email protected]
Since the first half of the last century, disability evaluation and workers’
compensation, that are a branch of the medico legal activity, stimulated
extensive doctrinal and methodological discussions. Due to the
continuous technological development the bioethical debate mainly
concerns occupational diseases and injuries. According to the bioethical
principles (principles of beneficence, non-maleficence, autonomy and
justice), the author examines some specific issues: the International
Classification of Functioning, Disability and Health (ICF) and the
application of personalized (or “precision”) medicine; the consent to a notherapeutic treatment; the concept of “ethical disability”. Bioethical
question about the occupation risks related to emerging technologies
such as nanotechnology and some types of biotechnology is also
discussed
AN INSTITUTION ONE CANNOT DISPARAGE:
THE LONG-TERM MARITAL BOND AND EUTHANASIA
IN HANEKE'S FILM AMOUR
Esther-Lee Marcus1,2, Amir Cohen-Shalev3
1
Herzog Hospital, Israel
2
Hadassah-Hebrew University Faculty of Medicine, Israel
3
Or Yehuda Academic Center, Israel
[email protected]
A number of films have dealt with euthanasia. Most of them, however,
focus on young adults who have had to cope with extreme situations such
as spinal cord injury and its aftermath (e.g. Million Dollar Baby, Eastwood,
2004; The Sea Inside, Amenabar, 2004), or the sudden appearance of
terminal cancer (e.g. The Barbarian Invasions, Arcand, 2003). A common
feature of these films is the issue of voluntary euthanasia, where the
patient’s mental lucidity is taken for granted. The decision of the
protagonist to terminate her or his life, whether actually implemented or
not, is the result of an autonomous mind choosing freely. Since most
stories portrayed in these mainstream films represent rare events with a
low expectancy for the average viewer, discussions of relevant ethical
issues remain essentially theoretical, having little potential bearing on the
lives of most viewers.
The recent prize-winning "Amour" (2012) by Austrian filmmaker Michael
Haneke, however, takes a radically different cinematic approach to
euthanasia, bringing it closer to home, as it were, for many viewers. The
patient in Amour undergoes a well-known process of gradual physical and
cognitive deterioration due to recurrent strokes, a far more common
Abstracts of Oral Presentations
occurrence in our present day, high-longevity society. Unique to Haneke's
film is its absolute reluctance to bow to commercial considerations, thus
putting considerable strain on its viewers' zone of comfort. In its
objective, matter-of-fact, so called "thin" cinematic language, Amour
provides an opportunity to circumvent the conventional discourse on
euthanasia. One such contribution relates to the significance of a longstanding marital relationship which reveals itself to be an indissoluble
bond, bordering on a psychological symbiosis. We argue that judicious
attention to the unique bonding between the protagonists as portrayed in
the film is an indispensable part of an in-depth discussion of the ethics of
euthanasia.
THERAPEUTIC OBSTINACY
Alfredo Marinelli1,2, Sabino De Placido1
1
University Federico II, Italy
2
IRCCS Neuromed, Italy
When a Doctor is exposed, for any reason, to the linguistic expression
“accanimento terapeutico” his emotional and expressive reactions are
dark, in every context in which this conversation occurs. To understand
why this uneasiness is always less well concealed, and to contextualise
this problem it is important to consider a semantic realignment for entries
of a meaning that is not often shared and/or however invalidated by
additional figurative meanings they may already have.
We shall travel over the paths that lead to the birth and diffusion of the
concept of Life Prolonging Measures. The following are the “cultural”
bases of the concept of Health interpreted as a Fact, or a Responsibility or
a Value, which, during the practice of the medical profession may induce
behaviours which might degenerate in life prolonging measures.
This chapter has its raison d’être, not only for the relational borders that
the life prolonging measures have with euthanasia, particularly frequent
binomial in the news, but also for the borders in reference to treatment,
to the access to it, its upkeep as well as to the access and participation to
experimentation in research. Therefore the Authors want to contribute to
the END OF LIFE RIGHTS by emphasizing on less known aspects of life
prolonging measures, such as the problems linked to genetic
characteristics.
A "rational model" is represented, characterized by a “humanistic and
existentialist” profile based on a true pivot: the Respect of the Person. A
characteristic of the doctor who pursues this profile is the understanding
of the perspective, of the experience, also the inner experience, of the
Citizen bearer of a Pathology, as well as the transmission of this
understanding to the Citizen. This is the base of the EVOLUTION FROM CURE
TO CARE.
CLINICAL EXPERIMENTATION ON VULNERABLE SUBJECTS:
ISSUES ON THE EVALUATION OF A STUDY ON PATIENTS OF
THE ITALIAN SECURE HOSPITALS (OPG)
Valeria Marino1, Alessandro Feola2, Luigi Tonino Marsella1
University of Rome “Tor Vergata”, Italy
2
Second University of Naples, Italy
[email protected], [email protected]
1
The aim of each Ethics Committee (EC) is to protect the rights of subjects
enrolled in a clinical trial. So it is called upon to give advice and opinions
about the fairness and ethics of scientific experimentation and
consequently its feasibility. Sometimes the ethical evaluation can relate to
epidemiological and medical-social projects that require the detection of
personal data, or to project that provide an experimentations on animals
and to those susceptible to problems of environmental ethics. We must
not overlook the fact that the EC of each Institution may also have an
advisory function so each operator in difficulty about the ethics of urgent
therapeutic choices can contact it in order to resolve their doubts.
The aim of our study is to deepen the ethical evaluations about a study
whose mission is to further the health conditions of the people who are in
the Italian Secure Hospitals (OPG) through the use of specific interviews,
which can give complete information about symptoms of psychological
distress, difficulties in the daily activities or in relationships with others,
and about the needs of hospitalized people. The main topics of interest of
the EC in evaluating this type of study are primarily the inherent ability of
hospitalized patients in the Secure Hospitals (OPG) to express a valid
consent and secondly the accordance to the International Guidelines for
111
Biomedical Research Involving Human Subject del Council for International
Organizations of Medical Sciences.
PATIENTS’ EXPECTATIONS OF THE MEDICAL PROFESSION
– NEW CHALLENGES
Krasimira Markova, Iveta Barchovska, Vlayko Vodenicharov,
Petar Chavdarovski, Medical University of Sofia, Bulgaria
[email protected]
In the last decades, all forms of authority in our society were challenged
and it becomes necessary to cope with the complexities of both modern
medicine and contemporary society.
The study aims to analyze the patients’ expectations and demands of the
medical profession. By examining those expectations we await to
understand what society wants from those responsible for the care of the
sick. As a tradition patients want caring and compassionate treatment,
with their confidentiality respected and their dignity preserved. Patients
granted physicians status, respect, autonomy in practice, and financial
rewards on the expectation that they would be competent, altruistic,
moral, and would address the health care needs of individual patients and
society. Historically, professional medical organizations are also expected
to demonstrate altruism, putting the interests of society above their own.
Our results show that patients are more concerned with the
accountability of physicians in both economic and political terms. As
medicine became more costly, patients consider it is inevitable that
physicians would be accountable in these newer levels. It is no longer
acceptable also the medical profession to carry out its deliberation in a
closed manner and that is a cause of major tension. It is now expected
that public membership in regulatory bodies to be significant. Patients
want the establishment of the medical standards to be done in
consultation with representatives of their patients’ organizations too. On
the other side, patients’ obligations are present, but the results show that
they are less clear.
The results of our study have substantial implications for medical
education and are a source of ideas and suggestions how the course and
the teaching can be improved. We suggest that it is necessary to enlarge
the ethics education with relevant scientific research to ensure that it
provides a way of getting students to reflect upon the ethical dimensions
and human rights consideration of medicine, health care and science,
widening the scope to include social and community issues. The medical
profession should understand patients’ expectations and demands in
order its social contract to function well for the quality of health care.
THE RELIEF OF THE SUFFERING IN THE HISTORY OF
MEDICINE AND OF THE INVALIDITY ON SOCIAL SECURITY
MEDICINE: COMPARISONS, ETHICAL CONSIDERATIONS,
DISEASE, AND PERFORMANCE
Vincenzo Martignetti, Italy
[email protected]
It’s well known the ancient French aphorism “often care, sometimes cure,
always soothe”. The relief of the suffering is a duty of the doctor of every
age: ethical duty and deontological duty. The suffering is a condition of
the pain that deals with the body and/or emotional past of a person. It
can be divided into physical, psychic and moral suffering; in particular the
last one deals with family, working and social role of the suffering person.
And it’s exactly the re-establishment, or better the resolution, of the
moral suffering that the social security medicine must get at. The relief of
the suffering so must be duty of the doctor (empathy) but above all a duty
of the society (the public medicine). The public medicine deals with the
relationships between medicine and community, and it’s consists of social
and legal medicine; the inspiring principles are: 1) the centrality and
dignity of human being; 2) promotion of the availability of the rights; 3)
the solidarity (as in art. 2 of the Constitution).
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UNESCO Chair in Bioethics 9th World Conference
EVOLVING ETHICAL CHALLENGES OF HIV IN OBSTETRICS &
GYNECOLOGY
Pasquale Martinelli, University of Naples, Federico II, Italy
[email protected]
To date, effective antiretroviral treatment has substantially modified the
quality of life and life expectancy of individuals with HIV. Actually, among
people infected, 5.3 million are access to antiretroviral treatment
worldwide, but they are only 12% of those who need therapy. Therefore
there is still an enormous gap between HIV burden and health care
availability in low income countries, with severe ethical problems. Threequarters of individuals with HIV are in their reproductive years and
without therapy they do not have the possibility to look after the health
of their expected children. Unlike in the past, few people keep their HIV
status completely secret. Moreover, fear of the stigma, discrimination and
violence decrease willingness to disclosure. The influence of health
services on disclosure is really important. Health workers are supposed to
encourage testing of partners and family members and to promote
disclosure, but often discrimination against HIV-positive individuals occur
when health workers treat them differently, use excessive precautions, or
withhold appropriate care. Moreover health facilities are often ill
equipped to favourite the compliance of the patients to the therapy and
they may not have the training to judge how to disclose patients’ HIV
status. In many studies, health workers expressed anxiety when caring for
women whit HIV and admitted that they used an overcare in handling
them. Conversely, health facilities should offer a support context for the
difficult of being HIV positive, but, unfortunately, they often fail.
COMPULSORY AND RECOMMENDED VACCINES IN
DEVELOPMENT AGE: THE IMPORTANCE OF VOLUNTARY
ASSENT
M. Martini, R. Cilberti, F. De Stefano, G. Icardi, University of Genoa, Italy
[email protected]
Pediatric vaccinations represent one of the most effective sanitary
interventions of the 20th century: smallpox eradication (declared in 1980
by the World Health Organization), poliomyelitis elimination in Europe
(declared in 2002) and the remarkable reduction in our country of
diseases such as diphtheria and tetanus are only some of the benefits of
vaccinations.
In Italy we have three typology of vaccinations: compulsory, compulsory
only for some type of people and optional, most properly called
“recommended”. Compulsory vaccinations provided for by the law for the
new born are: antidiphtheric, antipolio, antitetanus, anti hepatitis B virus.
Up till now these vaccinations are still provided for in the national and
regional calendars but in the last time even object of discussions by the
scientific community.
In this context, the passage from a health system that sanctions the
vaccinations compulsoriness provided for in the age of development to a
system of sharing of the public health purposes represented by a
voluntary assent for the vaccination surely, establishes an essential aim
for the medical services of a developed country. Actually vaccinations
represent an advantageous medical treatment in the relationship
risk/benefit even though to obtain collective benefits we need an
effective and well-structured degree of spreading and level of
organization as it happens in a system of “compulsory vaccination”.
The wide ethical, deontological, legislative and jurisprudential reflection
about the compulsory vaccination first of all recalls the principles
sanctioned by the section 32 of the Italian Constitution, where is stated
that health must be meant not only as an essential individual right but
even as a collectivity interest and so as a State duty to protect individual
health.
In Italy the Vaccinations National Programme 2005-2007 presents and
describes a way to overcome the “compulsory vaccination” and this is
now established as an aim of the Prevention Vaccinations National
Programme 2012-2014 also introduces an important innovation
concerning the overcoming of regional differences in the health planning
vaccination.
Some Italian Regions could get important results through the adoption of
innovatory programme of vaccine prophylaxis that have involved different
typologies of health workers and different local health centres.
But the first and until now the only Region in Italy that introduced
through the regional law the abrogation of compulsory vaccinations has
been the Venetian Region.
LIVING WITH AN ONCOLOGICAL PATHOLOGY
Roberta Martino, Scientific Institute for Hospitalization and Care, Italy
[email protected]
“…Being sick is to change, feeling different, being another self, and stop
being the same person means losing. I try to control myself, to not let me
win by the disease, thinking they were the same person, even if they are
ill…the world has become a smaller place for me. But this little world that
now is mine, I want the best…once the important things for me were the
ones that sick today have become trivial things; learning to look at life
through the eyes of the soul, it becomes important even a small
thing. After a life on the run, full of commitments and responsibilities,
only now I realize everything that surrounds me…initially I did not have
the full knowledge of my new condition, feeling a deep rebellion. Now I
have reached a balance that I never expected. I'm not sick, I am a person
who has a disease, and it is very different. Nowadays I do not know if I
accepted the disease. Let's say I gave a sense to it, so it's right. Accept it is
not a speech that I like it. It makes no sense…here, in my experience, the
great evil of a disease such as this, it is no longer sure of anything and put
everything in doubt, the future life, the desire for hope. Cancer focus all
my attention, stealing from all that nice long life can offer. I cannot make
plans, to think about tomorrow, and always live as if it were your last
day…with this disease, you misshapen, you bloat, not like you anymore to
yourself; I am of a nature that commands, before the disease hit me I was
really in my role. I feel so guilty for being sick, because I have upset
everything…earlier than necessary hospitalization, I never allowed to skip
a day of work because of illness, even in the worst moments. If I did I
would have felt like a worm. Every day I have always been led to believe
to be strong, to be the one who reacted in the best way, and always with
a smile. Many times I wanted to get this mask useless, explode, shout to
the world what I was evil, free to cry, despair, fear…I wonder why it
happened to me, because right now, what it is, because I'm sick? Who
would have thought that I would have known an experience so dramatic?
Do not judge me bad and unscrupulous, but now that five years have
passed, I wonder why me and not to the most evil people…”
(A sick person)
AT THE EDGE OF CONSCIOUSNESS: DOES NEUROSCIENCE
REVOLUTIONIZE LAW AT THE END OF LIFE?
Valeria Marzocco, Italy
[email protected]
Neuroscience in its legal and ethical issues –In the last decades, the
results offered by the research on the human brain has had a great
impact in the legal debate, for the expectations connected to the
possibility that neuroscience is able to explain in what human behaviour
consists of. These areas of research have important legal consequences,
and even more deep implications on the mind-brain problem. On this
point, the relationship between law and neuroscience gives origin to
ethical implications, connected not only with its assumptions, but even
with its developments; 2. Neuroscience in its legal and ethical issues –
Neuroimaging techniques - specifically, positron emission tomography
(PET) and functional magnetic resonance imaging (functional MRI) – have
offered a scientific access to how human brain works, even thanks to their
interaction with cognitive psychology. Starting from the research on the
deep brain stimulation, it was possible to locate and reconstruct in its
causes a link between human brain and human action (Monti, et al. 2010).
In this perspective, the functional analysis of cerebral activity has
contributed to throw a light into the ultimate boundaries of
consciousness, documenting phases in which, in a waking activity, it is
shown a residual cognitive activity too, even if not clinically recognizable
(Owen 2006). These limits of the consciousness, connected with a
permanent vegetative state, create problems and stimulus in both their
ethical and legal aspects. The main question relies in the possibility that
the description of these minimally conscious states allows us to recognize
human consciousness, meant as self-consciousness and mastery. In this
perspective, from a legal point of view, there is no doubt that there will
be in the future some important consequences connected with these
Abstracts of Oral Presentations
studies, not only for the legal definition and application of personal selfdetermination, but even for the legal concept of death; 3. The mind-brain
problem and the end of life. Does neuroscience change everything or
nothing? – The problems posed by neuroscience is not something new for
the history of philosophy, if it is true that this area of research touches
and repeats the classic mind-brain problem, in suggesting, not
infrequently, a kind of continuity with the famous idea that the brain is
able to secrete human thought, just like the liver do the same for its bile
(P. Cabanis, 1757-1808). What is the relationship between mind and brain
– or, rather, between human body, meant as biological matter, and its
ability to produce human thought – is the theme on which a deep and a
long-time lasting reflection has been produced in the History of Western
Philosophy, both in its materialistic theories (a.i for the Presocratic
thought, Democrito, and then, Hobbes) and dualistic hypothesis (a.i. for
the Platonic or Cartesian philosophical system).
th
During the XX century, tank to neuroscience, this ancient problem has
found new perspectives, in a kind of cyclical opposition between
reductionist perspectives - that connect the human consciousness
problem to a biological-cognitivist ground - and reductionist perspectives
– that, as shown by Searle, reject the thesis of a biological basis for
consciousness, and point up on the role that consciousness have to create
values and symbolic representations.
The goal of this paper is to verify how neuroscience is really able to
revolutionize legal concepts and assessments in end life human condition,
especially in minimally conscious states.
FROM CARDIAC DEATH TO BRAIN DEATH:
HOW DEATH IS ASCERTAINED
Giuseppe Mastroroberto, Massimo Niola, Pierpaolo Di Lorenzo,
Claudio Buccelli, University of Napoli Federico II, Italy
[email protected]
Death, considered as “the total and irreversible loss of organism’s
capacity to maintain its functional unit” (CNB 2010) does not happen
suddenly but takes place through the gradual extinction of the organic
activities of the cells and tissues making up the organism, whose survival
ceases in different times as a function of their individual oxygen demand.
The criteria followed to ascertain death have evolved over the years, with
the addition of EEG, based on the conclusions of the Harvard Report of
1968 to the classic death semeiotics and ECG methods.
Yet in recent times several ethics perplexities and worries have fuelled a
lively debate on the acceptability of both cardio-pulmonary and
neurologic standards considering that, as to the former, in some countries
observation time to diagnose death has been reduced to 2-5 minutes and,
as to the latter, in some cases some residual encephalic function can still
be observed in subjects whose “whole brain death” has been ascertained.
Furthermore it should be considered that the continuous breakthroughs
in resuscitation techniques allow to replace the main biological functions
(cardio-circulatory, respiratory, emunctory activity) thus producing life in
seeming also in patients with global irreversible neurologic lesions and
that, according to some, death ascertainment based on neurologic
standards is instrumental to the need for finding organs for
transplantations.
In the context, the Authors will review the evolution of the biological
concept of death and illustrate the criticisms raised in the literature to the
ECG- and EEG-based techniques. They will also share their views on a
recent document by CNB (2010) that, in Italy, equals whole brain death to
brainstem death rejecting mere cessation of cortical function as a
neurologic parameter.
TAKING CARE OF AN INJURED PERSON/WORKER
THROUGH AN OVERALL PROTECTION PROGRAM
DESIGNED FOR REINTEGRATION
Maria Rosaria Matarrese, Superintendence of General Medical INAIL, Italy
[email protected]
The evolution of regulations has redesigned INAIL’s institutional role that
through prevention, care, compensation, rehabilitation and reintegration,
aims to ensure an employee a complete and integrated coverage.
With this new structure, INAIL’s Rehabilitation Model based on
multidisciplinary approach brings together a variety of knowledgeable
specialists, in curative, therapeutic, evaluative of bio-psycho-social state,
113
with the objective not only for a functional recovery of an injured body
part, but also for the social and work aspect.
This rehabilitation phase is one of the most important aspects of taking
care of the person, since the final objective, from the perspective of the
person who has become disabled because of work, is to restore the ability
of self-determination, and one’s role in life.
The bio-psycho-social model based on ICF (International Classification of
Functioning - Disability and Health) of the WHO, represents a further
innovation adopted by INAIL Institute to analyze and maximize the
functional capability for the re-entry of the insured person, in order to see
his or her potential reflected with the company’s objectives.
A protocol of a specific rehabilitation programme has been designed with
sections for the analysis and study of specific body functions and
structures related to work, together with a checklist based on the ICF
system for the discharge process.
The “function” aspects of this protocol that emerge are about definition,
identification and qualification of the body function/movement related to
the work activity; either characterized or by second nature, through
“measurement” of specific tests and reporting the person’s performance
with the use of an assistive device.
We will present the data analysis of the protocol related to the
preliminary usage of the work function/movement according to the
model of ICF in a sample of over 50 cases.
BIOETHICS TRAINING IN MEDICAL EDUCATION IN INDIA
CURRENT REQUIREMENTS
Mary Mathew, Manipal University, India; Asia Pacific Bioethics Network,
International Network of the UNESCO Chair
[email protected]
Medicine is one of the few professions that sets a code of behaviour for
its practitioners. In the past the relationship between the doctor and
patient was paternalistic. Today this has changed. The Medical Council of
India (MCI) regulations on undergraduate medical courses emphasise that
medical graduates become exemplary citizens by the observation of
medical ethics, and fulfilling social and professional obligations, so as to
respond to national aspirations (2). This is one of the objectives of medical
education. Students need to develop a rational approach to solve medical
dilemmas that they will face in the future. Just as they learn various
subjects to tackle medical problems, they also need ethics to solve the
moral quandaries that they are likely to face in their practice in the future.
The MCI curriculum does not have medical ethics as a separate subject in
any of its courses. In the curriculum of forensic medicine, the student is
expected to “observe the principles of medical ethics in the practice of his
profession” This paper will discuss the challenges that are being
addressed such as courses, curriculum, teachers and resources on
bioethics as applicable to the Indian health care. The paper will end with
hopes for teaching ethics in medical colleges and universities.
A SURVEY ON THE DEGREE OF KNOWLEDGE OF
BIOETHICS & ITS APPLICATION IN HEALTH MANAGEMENT
Annunziata Mazzitelli, Maria Triassi, Giuseppe Ferulano, Miche D’Ambra,
Luca Caruso, Benedetto Neola, Italy
[email protected] [email protected]
Bioethics relates ethic and sciences, in a way much more modern than the
traditional and religious one, with the goal of dealing with and evaluating
even on a moral plan some scientific disciplines including medicine.
Medicine is among sciences the one that more concerns about the
individual well-being and this role determines the necessity to daily deal
with different problems like defending the individual integrity and
evaluating procedures that can safe-guard person's health. Therefore
every physician can't be able to leave bioethics problems out of
considerations. The aim of our project is to relate bioethical universe with
Local Health Unit Management of many units with different missions and
specializations: first we need to acquire a reliable information about the
sensibility grade and the knowledge of the Management about bioethics
and then we can formulate purposes to bridge the gaps and manage the
critical situations that have been discovered. The phase 1 of the
project (March - October 2013) consists of administering an A survey to a
sample of the management staff and a sample of doctors. After this phase
the data will be analyzed and a B survey will be administered to another
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UNESCO Chair in Bioethics 9th World Conference
sample of doctors, non-doctors and coordinating personnel of the same
Health Unit. Prof. Adriano Pessina, manager of the Bioethics Athenaeum
Centre of University Cattolica in Milan, has been asked to give a scientific
evaluation of the project. At the end of the project (estimated in October
2014), the conclusions and a complete data analysis will be published.
TO PRESERVE THE CHILDREN FROM PARENTAL CONFLICT
AND DIVORCE BY APPLICATION OF JURIDICAL AND
CLINICAL INSTRUMENTS
Adriana Mazzucchelli, CTU del Tribunale Ordinario di Tivoli (RM), Italy
[email protected]
In this work we illustrate the juridical instruments which are commonly
prescribed, in our country, in order to protect the child in case of parental
conflict and divorce.
Is displeasing to observe that the juridical guidelines frequently unfit the
main aim to preserve the children from traumatic impacts of parental
conflict or, even, introduce further disruptive effects in the family system.
By this reason, we also explore the conflictive family system from a
clinical point of view, and suggest an integrative model between clinical
and juridical instruments and psychological needs of the family system.
IS CONSENT TRULY INFORMED? THE READABILITY SCORES
OF INFORMATION AND CONSENT FORMS FOR CANCER
CLINICAL TRIALS AND RESEARCH IN ITALY
1
2
3
4
5
L. McMahon , M. Dall’Agata , P. Frati , S. Gambetti , S. Prisco ,
2
A. Ragazzini
1
U.O.C. Oncologia Medica – AULSS 9 Treviso, Italy
2
IRCCS - Istituto Scientifico Romagnolo per lo Studio e la Cura dei Tumori
(I.R.S.T.), Italy
3
Fondazione IRCCS, Istituto Nazionale dei Tumori, Italy
4
Medical Trials Analysis, Italy
5
CRA Fondazione GIMEMA e Fondazione FIL, Italy
[email protected]
Introduction: The signed informed Consent Form stands as the key prerequisite for the ethical conduct of research and provides evidence of the
subject’s consent to participation. How much patients really understand
and comprehend of the Information and Consent Forms (ICFs), has often
been debated and readability standards have been suggested to improve
its comprehensibility.
Methods: 114 ICFs administered to oncology patients for phase II-IV trials
in the 2007-2012 period were examined. The Italian version of the
Gulpease index was used to determine the readability score of each ICF.
Results range from 0 to 100, where “100” indicates the highest readability
and “0” the lowest. The advisable reading score for most documents
should be in the 60-70 range.
Results: Mean number of pages of the 114 assessable ICFs was 10.3 (2.5 ÷
27.5); those for industry funded trials (n. 47, 41.2%) are significantly
longer than those for investigator initiated trials (n. 67, 58.8%). Mean
number of pages were of 15.4 and 6.7 respectively (p<0.0005), with a
further increase in length in international (n. 50, 43.9%) vs national trials
(n. 64, 56.1%) with mean number of pages of 15.1 vs 6.5 (p<0.0005). The
mean Gulpease Index readability score of the 114 ICDs is 41 (30÷67)
irrespective of valuable variables.
Conclusions: ICFs for cancer trials seem far too complex and long to be
read and understood by an average study participant. Every effort should
be made to obtain a truly informed consent assessing the ICF readability
prior to study activation.
LIGHT AND SHADOW IN THE NEW ITALIAN REGULATION
ON ETHICS COMMITTEES
E. Meccariello, N. Cannovo, L. Terracciano, P. Buccelli, V. Graziano,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
The enforcement of Italian Act 189/12 (8 Nov 2012, n. 189, published in
Gazzetta Ufficiale 10 Nov 2012, n. 263) provides for a draconian reduction
in the number of Ethics Committees in Italy. According to the new
regulation there shall be one EC per million inhabitants and among the
existing EC’s only those with the highest number of single opinions on
drug trial protocols released between 2009 and 2011 and counted by AIFA
through Osservatorio Nazionale per la Sperimentazione clinica (national
observatory of clinical trials) shall remain operational.
This new regulation aims at bringing the number of EC’s in Italy in line
with the European average and at making the opinions released by the
EC’s present in one territory more uniform by harmonizing their operation
criteria.
This procedure of selection brings about many difficulties.
It does not consider the actual workload of EC’s (opinions on medical
devices, biomedical research and observational trials are not included as a
criterion) and this may lengthen the waiting time (since more proposals
shall be submitted to the same EC, which adds on top of the
administrative inefficiency of the relevant local authorities). This
procedure may also lead to the removal of EC’s that are more productive
than their analogues in other regions for demographic density principles.
Another innovation introduced by the Italian Legislator is to make the EC
opinion compulsory not only for trials on drugs and medical devices but
also on nutritional products and innovative surgical techniques. A higher
number of members shall sit in every EC and new professions shall be
represented.
The intention of the Italian Legislator to simplify the bureaucratic and
administrative process of clinical trial assessment by centralising and
harmonizing the operational procedures and to increase the qualification
of those who deal with clinical trials is certainly commendable,
nevertheless lowering the number of EC’s accounts for a limitation to the
freedom of research and deciding the number of EC’s based on
demographic density does not consider that patients enrolled in clinical
trials may also come from areas other than the region where the EC
belongs.
To be more specific, a lower number of Ethics Committees brings about
the following risks:
1. lengthy meetings, with less attention paid to every single case;
2. promotion of new reforms to reduce the scope of EC opinions (some
types of observational trials already fall outside the scope of EC’s),
thus preventing them to monitor a wide range of clinical research;
3. increased weight of red-tape on the assessment procedure, diminishing
it to mere formality deprived of any ethical value;
4. reduced possibility to guarantee safety of trials and respect of the
rights of the subjects involved.
For properly streamlining EC’s operation and increasing their credibility,
the following measures are recommended in our opinion:
1. giving the National Supervisory Authority (AIFA) all the necessary
means to constantly monitor EC’s activities;
2. removing committees that do not fulfil their obligations;
3. applying sanctions to hospital managements that do not provide EC’s
with sufficient technical-secretarial staff and do not fulfil their role as
relevant authority (slowing the whole assessment process down);
4. increasing the number training opportunities offered to EC members
and staff.
Abstracts of Oral Presentations
IS NETWORKING THE KEY FOR IMPROVING THE
SITUATION OF PATIENTS WITH RARE DISEASES IN SERBIA?
Branislava Medić¹, Bojan Stopić¹, Zoran Todorović¹, Stojan Perić²,
Danilo D.Obradović², Radan Stojanović¹, Katarina Savić Vujović¹,
Milica Prostran¹
¹ University of Belgrade, Serbia
² Clinical Center of Serbia
[email protected]
We aimed to assess knowledge and attitudes of neurological patients
towards the issue of treatment of rare diseases in our community.
In this cross-section study patients were questioned in the Neurology
Clinic of the Clinic Centre of Serbia. A self-completed questionnaire was
delivered to 60 patients. Total response rate was 95.83%.
The majority of patients (69.5%) believed that they were informed about
rare disease issue, but 53.3% of them were aware that their disease
belonged to that category. Patients considered that dealing with this issue
in our country is extremely important (median value - 9, interquartile
range 8-10) and that situation of patients is difficult (median value – 3.5,
interquartile range 1.25-7.75). Small number of our respondents are
members of associations of patients suffering from rare diseases (16.6%).
Our participants agreed that the key problems are: lack of public
information (21.83%), lack of scientific knowledge (14.78%), high prices of
drugs (14.08%), complicated procedures for their procurement (12.67%).
Patients found that greater involvement of state is most important for
improving the availability of drugs for rare diseases (55%), then medical
doctors (30%) and pharmaceutical companies and pharmacies (10%).
Finally, they suggested that pharmacotherapy of rare diseases in our
country can be improved by: well-timed diagnostics, raising general
awareness, simplified procedures for procurement of drugs and
registration of more appropriate drugs by the National Drug Agency.
In conclusion, we think that is necessary to improve knowledge of
patients towards issues of pharmacotherapy of rare diseases and support
them to form their own association to improve their situation in our
community.
THE DEVELOPMENT OF BIOETHICS THINKING SKILLS
Luigia Melillo, University of Naples, L'Orientale, Italy
[email protected]; [email protected]
The development of reasoned positions on a socio-scientific issues
involves complex cognitive skills. It needs to build some strategies to
foster critical thinking skills in high school students using Bioethics case
study with the aim to implement the development of decision-makers
and structured analysis tools: Students need opportunities to develop
arguments and discuss them with their peers. Regardless of the fact that
the arguments used do on scientific or social-scientific, they can improve
global processes of reflection and conceptualization that become logical
frameworks; as "People do not live their lives according to the disciplinary
boundaries, and students face socio-scientific issues with different
perspectives that integrate science and other considerations (Sadler TD,
Zeidler DL, 2oo9)
ETHICAL AND PSYCHOLOGICAL ASPECTS OF TRUST IN THE
HEALTH CARE SYSTEM IN SOUTH BULGARIA
Vanina Michaylova, M. Todorova., M. Liotchkova, I. Bivolarski,
Medical University – Plovdiv, Bulgaria
[email protected]
Introduction: The synchronized activities of medical experts at the
professional and organizational level in the process of functioning of the
health care system are based on mutual trust. Trust and its accompanying
risk constitute a non-investigated element in the relationships among the
medical team members in our country.
Objective: Investigation of the mechanism of origination of the feeling of
trust, construction of the risk related to it and the role of social control for
their regulation.
Methods: An individual survey has been conducted with closed questions
by virtue of a modified estimation scale variance, consisting of two parts,
each one having two panels, for identifying trust-related problems. The
survey involved 98 doctors being trained in a master’s program in health
115
care management from medical establishments within inpatient and
outpatient care in South Bulgaria.
Results: Within the organizational structure it has been observed that
medical team members highly appreciate mainly the confidential attitude
of the management towards the information inherent to the group,
meanwhile maintaining honesty and integrity in its communications with
the staff (Р<0,05). In a significant portion (more than 40%) the goals of the
manager are not similar to or do not coincide with those of the individual
teams’ members but his/her values are dominated usually (43,82%), and
always (25,84%) by the interests of the organization. Although the values
of the organization are dominated by the interests of the structure,
certain deficits are evident in the values and motivation for support of
united activities, which is evidence of the occurrence of risk.
Conclusion: Building trust-related strategies at the structure and
partnership levels is a reliable approach in overcoming the deficits in
patient servicing. It provokes the development of managerial techniques
and approaches assisting the more effective regulation of social control
and establishing an optimum integrated system for the health care service
users.
ETHICS PROBLEMS AND VALUES TRANSMISSION TO
PREVENT PREMATURE CHILDHOOD VIOLENCE
Antonella Migliore, European Centre for Bioethics and Quality of Life –
UNESCO Chair in Bioethics Italian Unit, Italy
[email protected]; [email protected]
The fast social, cultural and technological change determined childhood
violence cases increasing. This trend is strictly related to the lack of
personal identity and moral values. Children become sometime the
victims or authors of violent acts themselves.
Should be consider the lack of coordination between the political
strategies of schools, social institutions and families.
Adults are frequently unable to help children to drive positively their
attitudes.
PATIENT’S RIGHT TO INFORMED CONSENT IN REPUBLIC
SRPSKA: LEGAL AND ETHICAL ASPECTS (WITH SPECIAL
REFERENCE TO THE PHYSICAL REHABILITATION PROCESS)
1
2
Igor Milinković , Biljana Majstorovic
1
University of Banjaluka, Bosnia and Herzegovina
2
Institute for the Physical Medicine and Rehabilitation “Dr Miroslav
Zotovic”, Bosnia and Herzegovina
[email protected]; [email protected]
Informed consent of the patient is one the basic principles of medical
ethics. The principle of the informed consent, understood as the need to
secure a patient's fully-informed consent prior to medical treatment, is
closely connected with value of human dignity (as one of the most
important human values and ethical sources of law). The realization and
protection of patient's personal dignity, as an expression of his capability
for conceptual thinking and free choice i.e. natural competence for
modeling his own life, is not possible without patient's right to choose
character and scope of medical treatment (the goal that cannot be
adequately achieved within the traditional model of medical paternalism,
which is characterized by the physician’s authoritative position in relation
to his patients).
In the first part of the article, the content and the ethical significance of
the doctrine of informed consent will be analyzed and its connection with
the value of human dignity will be emphasized. Then, the legal framework
of the informed consent in Republic Srpska will be explained. Finally, in
the third part of the article the relevance of the informed consent
principle within the process of physical rehabilitation will be pointed out.
Although ethical aspects of physical rehabilitation are often overlooked,
especially compared to some other medical fields confronted with urgent
life or death situations, a physical rehabilitation program, it will be
argued, possesses strong ethical dimension and relevance (whose
important element is appropriate exercising of patient’s right to informed
consent).
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UNESCO Chair in Bioethics 9th World Conference
BIOETHICS IN THE PHARMACEUTICAL INDUSTRY?
CONCERNS, STANDARDS AND A STRATEGY FOR
TRUSTWORTHY REFORM
1,2
Jennifer E. Miller , Marie Catherine Letendre
1
Bioethics International
2
Harvard University, USA
3
Marymount International Rome, Italy
[email protected]
1,3
Criticism and distrust surround the pharmaceutical industry. Is there
something new that the industry can do to credibly address stakeholders’
concerns and begin to appropriately re-earn stakeholder trust?
Accreditation and rating labels originated close to 100 years ago to
improve the quality of hospitals. Today, these labeling systems also aim to
improve and demonstrate quality in many other areas of society.
We will explore if such a labeling program can improve the quality and
trustworthiness of drug companies’ services, organizational processes,
transparency, and accountability, by:
1. Cataloguing the prominent bioethical concerns voiced by stakeholders
about the pharmaceutical industry into four categories: (i) design and
management of clinical trials, (ii) fate of trial results upon study
completion, (iii) corporate marketing strategies, and (iv) access to
medicines.
2. Exploring the suitability and architecture of implementing an
independent third party accreditation, certification or rating system in
the pharmaceutical industry as a fulcrum to motivate companies to
improve and evidence their efforts to implement standards and
processes that address prominent bioethical concerns.
These types of rating programs are not without their own challenges,
limitations and susceptibilities towards corruption. To the extent possible,
the inherent challenges (such as possibilities of gaming and institutional
capture), costs and benefits of architecting such a program within the
pharmaceutical industry will be considered weighed, and addressed.
METAPHYSICAL ANALYSIS OF ISSUES REGARDING
HUMAN IDENTITY IN CONTEMPORARY BRAIN DEATH
CONTROVERSIES
Yuichi Minemura, University at Buffalo, State University of New York, USA
[email protected]
Modern controversies of brain death can be summarized by the theories
of neurologists like James Bernat, a supporter of the whole brain death,
and Alan Shewmon, his opponent. Bernat maintains that a brain dead
patient is dead because brain function plays a major role in the
integration of an organism. On the other hand, Shewmon states that brain
death is not the death of the organism because a ventilator and other
medical measures allow the somatic circulatory and respiratory function
to remain. First, I present a metaphysical theory that will support Bernat’s
neurology, and clarify that his view on an organism, when metaphysically
grounded, has validity in explaining human existence without an identity
problem. I further state what kind of metaphysical problem Bernat’s
neurology has. An understanding of his view is decisive when considering
its emphasis on the brain’s biological and integrative function as an
essential part of the organism. This can be referred to as the metaphysical
theory ‘animalism’ in which the essence and identity of a human being
are preserved by biological, rather than psychological, continuity.
Animalists, who consider biological continuity to be essential to life, can
explicate what we are without falling into the identity issue ‘too many
thinkers problem’, where at least two conscious beings appear in the
same organism due to the fact that a human animal shares the brain’s
mental capacity with a human person. The dilemma, however, is that
animalists believe only the function of the brain stem can essentially play
a role in maintaining life due to its spontaneous integration and
metabolism. I oppose this view due to the fact that the brain is not
essential to an organism, when considering the existence of an embryo
which possesses no brain stem function but is alive as an organism. Then,
I explicate the metaphysical theory upon which Shewmon relies for his
neurology to be philosophically grounded. He referred to ‘hylomorphism’,
assuming the brain dead patient to be identical to that which existed prior
to brain death due to the possession of a soul, and thus, to be alive. I,
however, insist that with a proper understanding of hylomorphism, a
patient does not maintain an identity although s/he may be alive with a
soul. According to the hylomorphic account, I argue that, contrary to
Shewmon’s notion, the patient is substantially different after brain death
due to the irreversible loss of the natural potential of a rational power,
whatever the same soul is in the organism. I maintain that hylomorphism
would not necessarily provide metaphysical grounds for Shewmon’s
critique of brain death.
RIGHT NOT TO SUFFER AND THE ANALGESIC THERAPIES
Daniela Minutelli, Italy
PAIN-definition as a complex experience: physical, psychological, ethical,
intrinsic to the human condition.
Definition of Suffering as deep psychological and physical discomfort that
produces a poor quality of life.
The processing of 'unnecessary pain' on the basis of a cultural shift for
which
The patient Hopeless does not mean that he is Incurable. This transforms
the work of the doctor from ‘to cure’ into ‘to care'' respecting two
fundamental rights of
Sick in the terminal phase: Do not suffer unnecessary pain and Keeping
Your Dignity.
About legislative situation in Italy and in Europe.
Examination of the application of Law 38 \ 10 three years after its
introduction in Italy.
- Analgesic therapies used: Pharmacological (invasive or not),
Instrumental (application of radiofrequency or medullar and peripheral
stimulators); Minimally Invasive Surgery (vertebroplasty); Psychology,
Rehabilitation and Occupational, all integrated together in different ways.
Attention also to the suffering of the family and other subjects belonging
to the affective sphere of the Sick. Use of opioids versus NSAIDs
(nonsteroidal anti-inflammatory Drugs): the situation in Italy and the rest
of the world. Needs' of a cultural change and better information in our
country for the implementation of the use of such substances.
ASSISTED HUMAN REPRODUCTION (AHR) AND THE LEGAL
CONCEPT OF FILIATION
Martha Miranda, Strathmore University Law School, Kenya
[email protected]
Assisted Human Reproduction (AHR) is the use of medical technologies to
encourage the conception and birth of a child. Initially, AHR was merely
considered as a remedy for sterile couples wanting to have children.
However, in recent decades, it became apparent that sterility is not the
only issue to be remediated by AHR.AHR has also been used in cases
where a person desires to be a single parent and where same sex couples
wish to have children. These circumstances pose some challenges in the
field of Law, especially to adjust the legal concepts of family and marriage
to the new models proposed by certain currents of thought. Because of
these innovations, the legal concept of filiation would in particular be
subjected to multiple variations.
In times previous to the scientific advances that allow conceiving a child
outside the woman’s womb or in an artificial way, filiation was only
possible by blood or by adoption. Nowadays, in some countries, the
implementation of scientific techniques such as AHR creates other types
of filiation, for example, a "parental project" of a person or a couple
(same sex or not), and “surrogacy”. Problems might arise when a child
born by way of AHR wants to know his or her biological parents and, in
the same way, when the donor (of the egg or sperm) wants to know the
child and be recognized as a father or a mother. In the case of surrogacy,
it is also possible that a woman who agreed to lend her womb to carry the
baby, wants to keep the child, because in the end, isn’t this baby her son
or daughter?
Thus, some questions arise: Is it possible for the Law to provide solutions
to the problems posed by AHR? Is the concept of filiation purely legal or is
it also a concept that comes from human anthropology? As illustrated
above, the purpose of this paper is to analyze the implications of AHR
techniques and its influence in the legal concept of filiation.
117
Abstracts of Oral Presentations
BIOETHICS FROM THE VEDIC TRADITION TIMES
APPLICATION TO ASIA
Manu Mittal, Jawaharlal Nehru University, India
[email protected]
Ancient India is rich with reflection on perennial ethical questions. ‘How
ought I to live? What kind of person should I be? What are the sources of
good conduct? What is the purpose of human existence? However access
to Indian ethical thought for western philosophers is complicated by the
fact that much of it does not fit within familiar disciplinary and cognitive
categories. At the same time, progress has been made in the critical
analysis of Indian metaphysics, epistemology, and philosophy of language.
Yet beyond the particular interests of contemporary analytic philosophers
it is also to be noted that the principles and doctrines of Indian ethical
thought display striking affinities to those found in pre-modern western
philosophy. India has been blessed with a glorious code on medical ethics
since the days of Caraka and Susruta (circa 600 BC). This Ayurvedic code
embodies the criteria for a good teacher and who should study medicine.
It also offers counsel on behaviour with patients and their relatives and
pointers that can be used by us when dealing with such issues as brain
death and organ transplantation. Especially striking is the emphasis on
transcending the needs of the body, mind and intellect in order to reach a
state where the cycle of birth - death - rebirth is broken. This paper will
discuss roots of ethical thought in the Vedas, the move from rituals to
socio cultural practices, individual and social ethics and end with Indian
term for morality and ethics is ‘dharma’. Dharma comes from the root
which means to hold together. And thus the function of dharma is to hold
the human society together for its stability and growth.
ACCESS TO HEALTHCARE FOR UNDOCUMENTED
MIGRANTS IN BELGIUM
Saphia Mokrane, University of Namur, Belgium
[email protected]
In Belgium, undocumented immigrants can get access to healthcare
through a specific health delivery system called the “Urgent Medical
Help” (UMH). Despite its name, the scope of UMH is not limited to urgent
healthcare. Actually, the law organising UMH is supposed to provide for
the same healthcare cover as that provided by standard Belgian
healthcare insurance. But undocumented people experience many
difficulties to get a real access to healthcare. In this presentation, I would
like to explain how the procedures that apply UMH on the ground create
obstacles to access to healthcare for undocumented migrants and reflect
one aspect of the structural violence (P. Farmer) they have to face.
THE CHALLENGE OF MEDICAL PROGRESS FOR
INTERNATIONAL SOFT LAW – THE EXAMPLE OF NEXTGENERATION-SEQUENCING
Fruzsina Molnár-Gábor, Max-Planck-Institute for Comparative Public Law
and International Law, Germany
[email protected]
In 1990, the Human Genome Project launched a new era of research of
the human genome. Continuous investigation resulted in the first
completely sequenced human genome 13 years later. Within a short time,
in 2007, sequencing of individual human genomes became possible. Highthroughput genetic analysis showed details of the construction and
function of human genetic material for the first time. It became clear, that
individual genomes vary in a high degree, which has a crucial impact on
the predisposition, the origin and the severity of illnesses.
Today, great research efforts are directed on the application of NextGeneration-Sequencing in medical care. Comprehensive research projects
set the mile stones. Also, the technique is increasingly used in diagnostic
contexts. Some countries have already started to integrate NextGeneration-Sequencing techniques in clinical diagnostics of certain
illnesses.
Compared to conventional genetic analysis, the application of NextGeneration-Sequencing techniques represents new challenges both in
research and medicine. Some of these significant challenges concern
incidental findings; others concern the informed consent process, and
again others the data security. Last but not least, the diffusion of
responsibilities among the involved actors, transparency, is challenged in
a particular way.
The application of Next-Generation-Sequencing poses new challenges for
international soft law. The UNESCO Declarations (especially those of 1997
and 2003) do not always give satisfying answers to questions and
challenges concerning new genetic analysis. Whilst the UNESCO Standards
may be willing to reflect the medical development in an up-to-date
manner, such an ethical and legal follow-up proves to be rather difficult in
the construct of non-binding international law.
After a detailed analysis of the above, new perspectives concerning the
UNESCO’s role in the age of Next-Generation-Sequencing shall be
proposed.
IS PREIMPLANTATION GENETIC DIAGNOSIS ETHICAL?
Giovanni Monni, Ospedale Microcitemico, Italy;
Vice President, WAPM – World Association of Perinatal Medicine
[email protected]; [email protected]
Serious birth defects, often genetically determined, complicate and
threaten the life of 3 - 5 % of newborn infants.
For many of these diseases 95 – 98% of the couples that perform invasive
prenatal diagnosis for their detection, subsequently opt for voluntary
termination of the pregnancy (TOP).
The Preimplantation Genetic Diagnosis (PGD) has been first performed in
1992 in order to avoid the profound traumatic psychological experience
of voluntary termination of pregnancy.
It is a very early prenatal genetic diagnosis procedure used in conjunction
with in vitro fertilization (IVF). Cell samples from the embryo at blastomer
or blastocyst stadium are tested for certain genetic conditions prior to
being transferred in the uterus.
The embryos with genetic disorders can be frozen and not transferred.
The most important indications for PGD are severe monogenic diseases
and the chromosomal disorders.
DNA Polymerase chain reaction (PCR) with primers, restriction enzymes
and heteroduplex analysis by fluorescence in situ hybridization (FISH) are
the most utilized methods of analysis.
As we have seen from our Sardinian experience in prenatal and
preimplantation genetic diagnosis, couples that have had voluntary TOP
for affected embryos or fetuses in 100% of cases would not repeat
traditional CVS (Chorionic Villous Sampling) or amniocentesis and
consequent TOP and prefer choosing PGD.
In Sardinia, in Greece, in Cyprus and in other countries, where there are
well operating programs of beta thalassemia control PGD is very efficient
and well accepted by couples.
In Italy, the law N° 40/2004 stopped Preimplantation Genetic Diagnosis
but at present a few centres initiate to perform PGD again following
numerous Italian sentences by courts and tribunals.
WHICH CONSENT IN BIOBANK-BASED RESEARCH
1
1
2
Gianluca Montanari Vergallo , Matteo Gulino , Francesco P. Busardò ,
1
Paola Frati
1
Sapienza University of Rome, Italy
2
University of Catania, Italy
Consent is a central issue in the regulation of the use of human biological
material for research purposes because it affects the balance between the
need to encourage scientific research and the need to respect the privacy
and freedom of self-determination.
This presentation examines two aspects: 1) the types of consent: broad,
partially restricted, multi-layered and specific informed; 2) the possibility
to withdraw consent.
Each of these aspects is examined by comparing the principles of the
World Health Organization and the Council of Europe with the laws and
documents of the committees national bioethics of Australia, Japan,
United States of America, France, Germany, Italy, Switzerland, Spain,
United Kingdom, The Netherlands, Denmark, Sweden and Norway.
This international scenario allows us to first understand the directions of
some of the major Western countries, but also to identify a variety of
solutions for each of the above mentioned aspects. On this basis, it
appears possible to start a confrontation that leads to uniform legislation
in the countries of the European Union.
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UNESCO Chair in Bioethics 9th World Conference
GENE THERAPY AND NEUROTECHNOLOGIES IN
NEUROLOGICAL PATIENT: POSSIBLE APPLICATIONS,
PROGNOSTIC IMPLICATIONS AND BIOETHICAL
CONSIDERATIONS
Angelo Moroni, Social Security Institute (INPS), Italy
[email protected]
The author discuss about those neurological diseases where genes
therapies and new biotechnologies are going to be applied.
He also refers about the bioethical and prognostic implications of such
procedures.
WHAT THEY SAY: THE ETHICAL AND MORAL CONDUCT OF
NURSING STUDENTS DURING STUDY AND CLINICAL
PRACTICE – A CASE STUDY
Debbie Muchnik, Zfat Nursing School, Israel
[email protected]
Background: During theirs studies, nursing students acquire tools for
ethical and moral conduct in addition to health related knowledge and
clinical skills (Bialik 2007; Patenaude et al 2003). These tools serve as
guidelines for future professional norms expected of the student,
including the provision of care based on integrity and trust. However,
immoral behavioral patterns are witnessed during nursing studies, such as
exam cheating, false reporting and patient information faking (Fred,
2008). In medical students, studies examining moral and ethical behavior
show a negative trend in the acquisition of these norms. Furthermore, a
correlation was found between trustworthiness during exams and
behavioral norms during clinical practice (Tolkin and Glick, 2007).
Aim: The aim of the study was to examine nursing student's beliefs
pertaining to ethics and morality both as students and as future nurses.
Method: 300 Junior and senior nursing students answered a 49 item
questionnaire based on Tolkin and Glick's (2007) questionnaire,
containing statements that reflect opinions and behaviors related to
morality during studies and clinical practice.
Results: Preliminary findings show that 60% of students declared that
they cheat on exams, and also thought that students that cheat on exams
will probably evade adverse event reporting. The majority of respondents
thought that learning ethics throughout the nursing program is crucial to
the formation of professional moral values and ethical behavioral norms.
Significant differences between ethnic groups were found in statements
reflecting morality and cheating tendencies. No differences were found
between married students with or without children. Additional findings
and implications for nursing education will be presented and discussed.
A NARRATIVE MODEL FOR INFORMED CONSENT WITH
YOUTH
Michelle A. Mullen, Juan Bass, Children’s Hospital of Eastern Ontario and
University of Ottawa, Canada
[email protected]
How can authentic informed consent be obtained with youth?
Informed decisions have 5 components: Disclosure, Understanding,
Capacity, Voluntariness, Consent/Refusal. This paper examines a model of
narrative in young men’s decisions around elective circumcision. The
model speaks to understanding and capacity, and whether a request for
surgery is truly voluntary. Elective male circumcision remains
controversial: various policies no longer recommend routine neonatal
circumcision, leaving the decision to parents. Some advocate abolition of
elective newborn circumcision. Yet some young men seek elective
circumcision. At our centre, youth 15 to 17 seeking elective circumcision
were asked to write short pieces to reflect their understanding and
reason(s) for wanting circumcision. Analysis included: patient age, word
count, text describing procedure, risks/benefits, irreversibility, reasons for
seeking procedure, emergent themes (e.g. emotional colour, peer
pressure), final decision. No identifying information was extracted: any
quotations used are brief. Fourteen youth participated: 4 changed their
minds about the procedure. Findings are presented using simple statistics
and themes (grounded theory). Substantively, the process and findings
are described and evaluated within the medico-legal description of
informed consent, and, from a narrative ethics perspective explicitly
concerned with giving voice to patients. Persons are presumed capable to
make their own health care decisions, yet for youth there may be concern
that an irrevocable decision may be coerced or impulsive. Narrative
reflections provide a means by which (i) misinformation can be resolved
(ii) minimize coercion (iii) mitigate impulsivity. This paper describes our
experience with narrative reflection to facilitate informed decisionmaking for elective procedures among youth, with potential broader
applications.
“UMUNTU NGUMUNTU NGABANTU”: AN AFROCENTRIC
APPROACH TO BIOETHICS
Tambu Muoni, States of Jersey General Hospital, Jersey
[email protected]
The purpose of the study was to examine the African ethic of ubuntu as a
framework for African bioethics, explored how ubuntu is applied in the
everyday lives of Sub-Saharan African and how ubuntu can be applied to
clinical ethics. The study examines UNESCO's proposal for a normative
approach towards bioethics.
Bioethics is relatively new field in Africa. Culture and bioethics are closely
related. Ubuntu is an African ethic which for many years has anchored
and shaped the African way of living. Ubuntu is a recognized African
concept which drives and anchors African communities. It is a concept
which promotes oneness, togetherness and communal living within
African communities. The Zulu maxim “umuntu ngumuntu ngabantu”
epitomizes the concept of ubuntu. Umuntu ngumuntu ngabantu means a
person is a person through others meaning, for a person to flourish, his
success comes through the support of others. Ubuntu is about oneness,
inter-dependency and togetherness, and from this perspective ubuntu
differs from Western bioethics which promotes individual autonomy. The
study determined that ubuntu can be successfully applied to bioethics in
an African context.
There is a growing need for bioethics in Africa – but, there is need to
ensure that bioethics programs are culture sensitive. Globalizing bioethics
is not ideal as it poses a threat to culture and heritage. Ubuntu has been
and still remains the bedrock for African ethics and can be incorporated
into healthcare ethics in a way which reflects the beliefs and values of
both the healthcare provider and healthcare user.
ABOUT THE CHOICES BETWEEN “HOME CARE” AND
“HOSPICE”
Carlo Musella, Francesco De Micco, Mariano Paternoster, Claudio Buccelli,
University of Napoli Federico II, Italy
[email protected]
In the last years there have been significant improvements in the
diagnosis and treatment of neoplastic diseases.
However, 30-35% of patients with cancer have, even today at the
beginning, metastatic disease with survival prospects of no more than 1224 months.
In addition, these patients have many physical symptoms realizing social,
psychological and family difficulties with critical impact on the quality of
life.
Recent studies have emphasized the importance of associating with the
anti-cancer therapy treatments to control the symptoms caused by
cancer, getting a benefit not only on the quality of life but also in. terms
of survival.
For this reason is important to promote continuous assistance and pain
control to the patient in the terminal phase and to improve the quality of
life through a holistic health approach.
The Authors analyze the programs of home care and hospice care through
the evolution of Italian law and their ethical aspects: such as information
to the patient and the family, consent to treatment, refusal of treatment,
prevention of the request for euthanasia, duty of confidentiality and
Responsibilities of health care professionals operating in the field of
palliative medicine.
Abstracts of Oral Presentations
INTERNATIONAL LEGAL PROTECTION OF CHILD’S MEDICAL
RIGHTS AND BIOETHICAL ISSUES
Aytan Mustafayeva, Institute of Human Rights, National Academy of
Sciences, Azerbaijan
[email protected]
Aspiration of international community to guarantee rights of vulnerable
social groups - ethnic minorities, migrants, invalids, women, children, etc.
became quite natural in development of human rights ideology. In 1959,
the UN General Assembly adopted “Declaration of Rights of the Child”
and in 1989 “Convention on the Rights of the Child”. Together, these two
documents are often called “Child Rights Charter”. Ideology of provision,
guarantee, protection of patients' rights in the last 30 years is in line with
bioethics and modern medical law.
Vulnerability of children is particularly evident when it comes to their civil
and political rights, which are often not recognized and not respected,
even in principle (the right to participate in decision-making, freedom of
expression, freedom of conscience and religion, freedom of association).
In the context of health care abovementioned norms of the “Child Rights
Charter” get logical development in medical-ethical principle of absolute
respect for life, the doctrine of “informed consent”, etc.
Modern principles, norms, standards of medical ethics are, above all,
submitted in documents of World Medical Association (WMA). In 1995,
WMA adopted an expanded edition of Lisbon Declaration, which
highlighted section of “Legally incompetent patients”. Concept of
informed consent in pediatrics is also stated in this section.
The Preamble to the “Ottawa Declaration on rights of patient-child”
reveals the essence of child health care. It also provides definition of
“child” – a person from birth to the end of the seventeenth year of his life.
As for the legislation of the Azerbaijan Republic, children-patients' rights
are widely reflected in it - it’s stated in the Constitution “Motherhood and
childhood are under protection of the state”, “Everyone has the right to
life”, “Nobody can be subjected to medical, scientific or other experiences
without a voluntary consent”. If given constitutional norms directly
perform its regulatory role in relation to medical practices, other
constitutional rules carry out such role indirectly. “Family Code” of the
Azerbaijan Republic for the first time introduced the term “surrogate
mother” as a legal concept.
Patient rights in general and in particular children-patients’ rights most
completely are presented in the legislation of the Azerbaijan Republic “on
Health Care”. The major role in pediatric practice is played by Art. 24 of
“Rights of minors” in which the following aspect is important: “Minors
over 15 years old have the right to voluntary informed consent to medical
intervention or rejection of it …” Thus, onset of civil capacity in dealing
with medical issues in Azerbaijan Republic comes at the age of 15 years.
This aspect of the law, in our view, needs to be corrected. Unambiguous
vesting the right in legislation to child-patient from 15 years to give
“informed consent” himself, practically in all cases of clinical practice
seems debatable.
HOW DEVELOPMENT OF THE INTERNATIONAL
BIOETHICAL LEGISLATION INFLUENCES ON
AZERBAIJAN LAWS
Aytan Mustafayeva, Vugar Mammadov, Adila Abbasova,
Mahammad Baziqov
Human Rights Institute, National Academy of Sciences, Azerbaijan;
Azerbaijan Parliament
[email protected]
Probably today there is no democratic country, where the importance of
protection of human rights in all aspects of public life, particularly in
medicine, is not recognized. Rights in this area are closely related to
questions of ethics and are based on well-known principles. However, a
strict legal verification of the principles is necessary, since ethical
standards are simply "social" sanctions that do not guarantee compliance
with the law. Yet, recourse to the international or national legislation is
not always the key to the problem. It is difficult to present a set of
legislative rules, which will be valuable for everyone, since values and
conceptions of life and death are so different in general bioethics.
It should be also noted that some countries have legislation on bioethics
at the national level – the laws on bioethics in France (Bioethics Law), the
UK (the Human Fertilization and Embryology Act), and Germany (the
Embryo Protection Act).
119
Still, there was no single legal act regulating the issues of bioethics until
rd
October 21, 2005, when on the 33 session of UNESCO’s General
Conference the Universal Declaration on Bioethics and Human Rights was
adopted. The Declaration addresses ethical issues related to medicine, life
sciences and associated technologies as applied to human beings, taking
into account their social, legal and environmental dimensions.
In Azerbaijan, fundamental changes in understanding the law took place
in the 1990s after the independence. Attempts of the modern Azerbaijani
law to replace moral regulation by legal envisages better protection of the
interests of all members of the society. In this regard, it seems urgent to
use the world experience in protecting patients' rights, taking into
account national specifics of Azerbaijan.
It should be noted that the main obstacle in implementation of the abovementioned human rights, is clearly insufficient knowledge, primarily by
the medical staff, of the content of the patients’ rights. At the same time,
the importance of this knowledge is understood by the medical
professionals in developed countries, where control of human rights in
health care has become as stringent as in other areas of human relations.
RIGHTS OF CITIZENS FOR HEALTHY ENVIRONMENT
DURING NATURAL URBAN GROWTH (RIGHT TO SILENCE)
Aytan Mustafayeva1, Vugar Mammadov1, Adila Abbasova2,
2
Mahammad Baziqov
1
Institute of Human Rights, National Academy of Sciences, Azerbaijan
2
Milli Mejlis, Azerbaijan
[email protected]
Negative impact of noise on human psychics is in the fourth place after
alcohol, tobacco and use of low-quality food products that negatively
affects health of the nation. International Day of fight against the noise,
initiated by Institute of Technical Acoustics, Aachen, Germany is
celebrated in Europe on the last Wednesday of April. According to the
Institute of Acoustics, noise stronger than 65 decibels increases risk of
heart attack for 20%. According to report of the action organizers, sounds
with power more than 85 decibels lead to damages of organism which
can't be corrected by means of drugs or operations.
Noise is extremely harmful to pregnant women and their unborn children.
Noise badly influences on central nervous system, preventing normal rest
and sleep, contributing to development of neuroses; increases blood
pressure and makes other disorders. Ultrasound and infrasound also
adversely affects organism, although ear doesn’t perceive them.
Passengers of planes often feel state of distress and anxiety, one of the
reasons for which is the infrasound. Spanish Supreme Court took an
unprecedented decision in the history of the country fining state company
AENA, which controls the capital airport "Barajas", for exceeding the
permissible noise level in homes of the inhabitants of the Santo Domingo
village, near Madrid, located on the path of landing aircrafts. The Court
passed the decision to respect "fundamental human right to silence and
rest” because this right had been violated in their own homes because of
noise of planes flying above their houses ".
The problem of noise pollution is very serious in developing countries,
including Azerbaijan. Our capital Baku is rapidly turning into a
megalopolis. On July 8, 2008 President Ilham Aliyev signed a Decree on
establishing "Norms of vibration and noise pollution, having negative
impact on environment and human health". Later, in 2009, Decree on the
enforcement of the above-mentioned Decree of the President of Republic
was published.
Development of the city, its infrastructure is very important. But it must
not be forgotten that the most important indicator of the civility level is
the cultural level of population. And respectful, caring attitude for
surrounding us living environment, including environmental rights of
citizens – is one of the most important indicators and ethical factors in
this context.
DEVELOPMENT OF HEALTH BILL IN KENYA:
CHALLENGES AND LESSONS LEARNT
Lucy Musyoka, Ministry of Health, Kenya
[email protected]
Following the enactment of Constitution 2010, all existing laws needed
review and alignment with its right based, democratic and participatory
principles. The state department of health recognized its legitimate role
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UNESCO Chair in Bioethics 9th World Conference
of steering the development of a harmonized health law and initiated the
process in June 2011. The constitution 2010 introduced two distinct levels
of government which operate inter dependently and in cooperation. This
implied new institutional and relationship arrangement, accountability
levels and mechanisms with respect to the respective mandates while
regulated by some legal mechanism. The Constitution 2010 provides the
right to the highest attainable standards of health, right to reproductive
health and right to emergency medical treatment radically changing the
character of health services delivery. This provision demands for legal
instrumentation to give character/content to these rights.
In a period of one year under the government stewardship, many
consultative meetings were organized to develop the draft Health bill.
This bill was adopted and approved by cabinet. However, the health bill
was not published for debate in parliament due to various challenges
calling for further consultations and interrogation. These challenges
presented to the Attorney General office as dis-contention with the bill
underlined the importance of trust and stakeholders confidence. Some of
the key challenges included (1) the perceptions that the bill did not reflect
the views of stakeholders and was a reflection of the Government and
Donors. (2) desire of the regulatory subsector to maintain status quo and
continue exploiting and confusing the investors in the health care
industry. (3) poor communication and inadequate evidence to support
mainstreaming the regulatory sub-sector. (4) poor governance that
promoted conflict of interest within the regulatory subsector.
Lessons learnt in this process include the role of government in
stewardship and need to delink governance of regulatory subsector from
policy making, basis for consensus building, investments in time to ensure
engagement and sustained stakeholders’ involvement. The lens of trust
during stakeholders’ engagement allowed them to contribute to the bill.
Stakeholders participation through consensus building, negotiation,
trade-offs, conflict resolution and holistic thinking enhances transparency,
improve information flow and communication.
ETHICAL AND LEGAL ISSUES IN THE CONTEXT OF CLINICAL
RESEARCH USING VULNERABLE POPULATIONS IN INDIA
Sarojini Nadimpally, India
[email protected]
As the medical research world becomes increasingly globalized several
pharmaceutical companies have started outsourcing drug trials to
developing countries focusing on the recruitment of and research on
human participants. The trials are generally conducted in a wide range of
population, including urban, rural and tribal settings. That due to the
widespread illiteracy and poverty in India a lot many people enroll into
trials to get some money or to obtain free treatment. In many cases no
care is taken for the adverse events that the trial participants experience
and no compensation has been paid for the trial related injury or death.
The presentation questions the manner in which clinical trials for
vaccines/drugs is taking place in India through a recent controversial
“Post Licensure Observational Study of HPV Vaccination: Demonstration
Project”. The Human Papiloma Virus (HPV) vaccine trials. These trials have
taken place in the two States of Andhra Pradesh on 23,000 young girls
aged between 10-14 years and later suspended in the year 2011.There
has been a lot of procedural illegality and unfairness in the manner in
which the informed consent was taken, adverse events and deaths were
reported violating all the ethical norms and legal instruments.
That two of the cardinal principles of medical ethics are patient autonomy
and beneficence has been completely violated.That clinical trial requires
high standard of ethics, scientific merit and proper governance and
processes. Adhering to the processes established in law and in practice is
not only for integrity but also to maintain credibility with the research
participants and community. India is a signatory to various International
covenants and instruments that oblige the government to provide the
highest standard of care and health. However, the way HPV vaccination
clinical study has been conducted in India is a classic example of complete
violation of the ethical, the legal principles and values, respecting rights
and dignity of the minor girls from the vulnerable groups.
PRACTICES OF OBTAINING INFORMED CONSENT IN
LEBANON AND QATAR: A DISCONNECT BETWEEN
STANDARDS AND PRACTICE
1
1
2
1
Rima Nakkash , Jihad Makhoul , Khalid Al Ali , Farah Mazloum ,
2
2
Yara Qutteina , Catherine Nasrallah
1
American University of Beirut, Lebanon
2
Qatar University, Qatar
[email protected]
With the increasing number of universities in the Arab region, there has
been a consequent increase in the number of research projects
conducted particularly with human subjects. Despite the need to
understand the application of ethical standards that ensure human
subjects are protected from harm, few studies have evaluated and
documented such practices in applied research ethics in the Region to
date. One of the main requirements of proper ethical conduct in research
is to obtain informed consent from research participants prior to
commencement of any research activity. Guidelines in obtaining informed
consent are standardized by IRB committee operations and oversight
procedures.
This study explores experiences of researchers, in universities in Lebanon
and Qatar, in obtaining informed consent, which is an aspect of interest of
a large research study that explores applying research ethics, cultural
relevance of applied ethical standards, and surveys on procedures and
operations of IRBs. Findings from over 45 in-depth interviews with
researchers in both countries indicate multiple variations in seeking and
obtaining participant informed consent as well as the terminology used
regardless of the presence of IRB oversight Terms used include
"information forms", "consent letters", "mini", "oral", "verbal", "written",
"passive" and "long" consent forms. Their choice of consent seeking
method and form seems to be influenced by study sample size, research
methods, their judgment of how invasive the research is (biomedical vs.
social), the ease of access to research participants, the research
participants themselves (vulnerable or not), the context, and setting
where the research is taking place. Implications point to the need for
research capacity building to improve the quality of research and the
application of research ethics for the protection of human subjects and
their rights as participants in research.
ANALYZING DONATION IN XXI CENTURY:
TOWARD NEW FRONTIERS
Alessandro Nanni Costa, National Transplant Centre Director, Italy
Nowadays procurement and transplantation network and coordination
has to be transformed more and more in an integrated pathway among
health system and hospital context.
As a matter of fact, donation process require synchronization of handling
every step by consuming human and technological resource of hospital,
whether transplantation has to be considered as a great therapeutic
resource of organ failure management.
BIOETHICAL IMPLICATIONS OF GLOBALISATION IN INDIAN
HEALTH CARE
Dinesh Narayanan Cochin, Kerala State Bioethics Unit, Internal Network
UNESCO Chair, India
[email protected]
As Political Economic and Social changes sweep across the globe the term
globalisation acquires a meaning much beyond geopolitics and economics
to include the globalisation of culture unleashing powerful forces of
sociocultural transition
Transition is taking place in Asia, Latin America and Europe with influence
in some form in most regions of the world and humanity; Transition and
Transformation are occurring at a rapid pace with its problems Thus
Globalization acquires a meaning beyond economics and trade to include
culture. New culture of change in the established encompassing values
traditions, norms etc. with these new ethical challenges in many areas
and importantly Bioethics arises
Globalisation presents formidable challenges with respect to the
promotion of health and future health prospects increasingly depend on
it. Globalisation however presents also a dark side new poverty, new
Abstracts of Oral Presentations
instabilities, new uncertainties and new risks. Governments are having
less control over flows of information technology, disease, mobility of
people arms and financial transactions whether licit or illicit
Frequently the ethical and social implications of aspects of globalisation
are recognised only after the fact, thus leading to fragmented and hastily
implemented strategies to remedy or modify unforeseen consequences of
the globalisation process
This paper will review the bioethical implication of Globalisation as it
applies to India and to societies such as India that are in transition
resulting from globalisation. Financial driven globalisation of sponsored
clinical trials for new treatments, First world health care at third world
prices – Globalisation, Bioethics and medical tourism and the global
market of health services its ethical implications of these globalisation
consequences to the host societies. Finally this paper will make
recommendations to address the bioethical implications and will suggest
that resources be used to anticipate the major reasons for bioethical
concern surrounding globalisation and to forecast future scenarios and to
formulate appropriate new policy options in this field.
CONSENT OF MINORS: BIOETHICS POINT OF VIEW
Elena Nave, University of Turin, Italy
[email protected]
How should we treat children – also in the medical sense of the word? As
moral subjects, or as objects? Competent or incompetent individuals?
Competence enables the subject to sign an informed consent form: a
competent individual is in the best position to determine which
treatments are appropriate for him/herself (Kleinman 1991). There are
some criteria for decision-making capacity for consent to treatment
(Appelbaum 2007). A moral subject is someone who takes responsibility
for his/her own choices and actions, and for their predictable
consequences. Many children are capable of making well-pondered
judgments. Children start early on to attribute meaning to what is
happening, to show preferences, and to accept the responsibility on some
of their choices. Moreover, “contingencies such as experience and ability
can be more salient than age to a child’s competence” (Alderson 2007).
The competent child “achieves a sufficient understanding and intelligence
to enable him/her to understand fully what is proposed”, and has
“sufficient discretion to enables him/her to make a wise choice in his/her
own interests”.
NARRATIVE AND BIOETHICS THEMES WITHIN THE
NURSING EDUCATION
Marina Negri, Università degli Studi di Milano, Italy
[email protected]
Narrative has been purposed in range of clinical practice and nursing and
medical education. It allows to reach a full comprehension of the patient
and a better awareness of the practitioner, the building of a better
relationship between practitioner and patients and also among the
practitioners themselves.
Because narrative represents events as embedded in the lives and ongoing concerns of human beings, it has been described as essential to
moral knowing. (K. Montgomery Hunter, “Narrative, literature, and the
clinical exercise of pratical reason”, in The Journal of Medicine and
Philosophy 21 (1996) 303-320)
Narrative ethics practice helps to prevent the development of dilemma,
building an articulate knowledge about moral side of patient's current life.
As observed by Charon, it is really useful in the ethical education sector,
more incisive and captivating than other methods. (Cfr. R. Charon,
“Literature and Medicine: Contributions to Clinical Practice”, in Annals of
Internal Medicine 8 (1995) 599-606)
Experience is gained when one actively learns to recognize salient ethical
distinctions in practice with particular patients and family. (Benner, P.,
“The role of experience, narrative, and community in skilled ethical
comportment”, in Advanced in Nursing Science 2 (1991) 1-21)
Is presented here the experience of a seminar for students of the third
year of undergraduate degree in Nursing.
Bioethical thematics filter through the students' stories.
They show the experience they are doing. Through the experience, they
acquired awareness of ethical basics, which they have studied, but that
they have deeply understood only during the narrative time.
121
This narratives talk about learning, even if yet they do not match the
clinical learning “measurable” skills.
This experience testifies that exists a large learning sector about
professional ethics that happens during clinical practice.
We need narrative tools in order that this experience becomes subject of
suitable reflection, therefore it will be awareness.
OPT-OUT ORGAN PROCUREMENT POLICIES AND
GOOD COMMUNITIES: ARGUMENTS TO IMPROVE
PROCUREMENT
1
J.L. Nelson , G. Mancini, A. Mongoven, A. Caplan
1
Michigan State University, USA
[email protected]
Most people accept that if they can save someone from death at very
little cost to themselves, they must do so; call this the 'duty of easy
rescue.' At least for many such people, an instance of this duty is to allow
their vital organs to be used for transplantation. An opt-out system,
resting not on the authority of 'presumed consent' but on the recognition
of a duty to one another, has the prospect of prompting people to
understand more richly the ways in which they are both physically
embodied and communally embedded.
OBESITY AND PERSONAL RESPONSIBILITY
Morten Ebbe Juul Nielsen, Martin Marchman Andersen, Copenhagen
University, Denmark
[email protected]
What does it take for an individual to be personally responsible for
overweight or obesity? This question is of paramount importance for an
ethical assessment of current and future practices of health care, public
health programs etc. Philosophers working on the question of
responsibility disagree on what it ultimately takes for an individual to be
responsible. We examine three basic approaches to responsibility and
spell out what it takes for a person, according to each of the approaches,
to be responsible for obesity. We show that only one of them – what we
call the naturalistic approach – can accommodate some widely shared
intuitions to the effect that causal influences on obesity, such as genetics
or certain social circumstances, diminishes or even completely
undermines personal responsibility. However, accepting this naturalistic
approach most likely makes personal responsibility impossible. We
therefore need either to reject some widely shared intuitions about what
counts as responsibility-softening or -undermining, or accept that there is
no personal responsibility – for obesity or, for that matter, anything.
Finally, we briefly elaborate on the political implications of the latter
alternative.
MORE PROFESSIONALS IN ETHICS COMMITTEES
M. Niola, I. Cerrone, C. Leone, M.A. Zinno, V. Graziano,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
The number and qualification EC members are continuously changing in
Italy, given the constant evolution of the scope and range of experimental
research.
From the initial membership distinguished in medical and non-medical
experts (D.M. 15/7/97), we have come to more and more specific roles
and professional figures.
According to the first Italian Guidelines (Linee Guida di riferimento per
l'Istituzione e il Funzionamento dei Comitati Etici) (D.M. 18/3/98), a CE
should count a biostatistician, a pharmacologist, a pharmacist, a general
manager or a scientific director (IRCCS), experts in law, in bioethics, in
general medicine, representatives of nurses and volunteers’ associations.
Recently (D.M. 12/5/06 and 8/2/13) new professionals have been added
to the list, such as paediatricians, experts in medical devices, clinical
engineers, experts in in nutrition, clinical experts in case of new
procedures experts in genetics, forensic doctors, experts in insurance law.
The inclusion of experts from different backgrounds adds to the
professionalism of EC’s and favours cultural exchange, which goes hand in
hand with greater responsibilities.
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UNESCO Chair in Bioethics 9th World Conference
The EC members shall harmonize their skills through life-long learning,
receiving training on all the ethical, methodological and organizational
aspects of research trial protocols.
The EC “Carlo Romano” in cooperation with the UNESCO has carried out a
constant educational activity over the years organizing meetings,
workshops and international conferences.
It is worth mentioning the project R.E.M. (Rights and Ethics in Medicine)
involving 64 ethics committees in a network and a forum.
FUTILE TRIALS: ETHICAL ISSUES
M. Niola, L. Paciello, V. Graziano, P. Di Lorenzo, C. Buccelli,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
Scientific research doesn’t always produce valuable knowledge and
therapeutic applications. It sometimes ends up in futility.
There are several definitions of this term in the literature and it is
important to correlate each of them to the goal pursued in terms of
knowledge acquisition and to the techniques available in a given moment
in time.
A clinical trial may be biased by the unjustified obstinacy of researchers
who are so determined to accomplish it that they may abuse of the rights
of patients.
Therefore it is important that EC’s guarantee the respect of these rights as
well as the safety and wellbeing of patients. They shall also identify this
phenomenon that can be ranked according to a decreasing severity scale
as follows:
• abuse (ethical, biological);
• fraudulence (conflict of interests);
• exaggeration;
• futility (risks, benefits).
We browsed the database of the Ethics Committee “Carlo Romano” of
Università degli Studi di Napoli Federico II in search of trials characterised
by futility.
26 trials, out of 1501 cases examined over the past 5 years, were rejected
by the EC for futility because of poor scientific relevance of primary
endpoint, weak experimental design (both in scientific rationale and in
endpoints) and unacceptably unfavourable risk/benefit relationship.
In some cases other problems had been observed: patients’ information,
informed consent forms and privacy form, statistical methodology,
exclusion criteria and liability insurance for researchers.
Some other protocols had initially been deemed futile, were corrected by
the researchers based on the EC’s suggestions and then approved.
THE TRUTH AND THE PHYSICIAN
Rachel Nissanholtz-Gannot1,2, Yair Shapiro1
Ariel University, Israel
2
Myers-JDC-Brookdale Institute, Israel
[email protected]
1
Speaking the truth holds a moral value within Medical Ethics, as well as
within the Law. However, society does not often expect one to speak the
truth. For instance, we would not presume that in the case of a defendant
on trial that they would tell the truth, if this may result in a conviction.
Additionally, it is not expected for an attorney to speak the truth, in a
circumstance that it would go against his clients' interest. Moreover, in
some situations we do not want to explore the truth, such as in paternity
matters concerning illegitimate children.
On the contrary, in the Medical arena we certainly do expect physicians to
in fact embody the truth, even if this may counter their own interest. In
an event where physical harm has occurred to a patient, we expect the
physician to document everything in the medical record, even if it might
expose him to claim. Under Israeli law, you may establish an inspection
committee to examine errors in medical procedures, in which the findings
are given to the patient.
We, as a society, should reexamine our expectations of Medical
Professionals, to inform all patients about mistakes and mishaps. We
plead that such Professionals should not be granted a different set of
standards versus other fields. Furthermore, we ought to consider varying
methods of improving the Medical structure, perhaps through use of
compensation given to eligible patients, without exposing Medical
Professionals to legal action. We will propose several options to do so.
CURRENT LEVEL OF KNOWLEDGE, PERCEPTION AND
PRACTICE OF MEDICAL LAW AND ETHICS AMONG
NIGERIAN MEDICAL PRACTITIONERS:
DEFICIENCIES AND REMEDIES – THE NIGERIAN MODEL
Awawu Grace Nmadu, Victoria Nanbben Omole, Musa Abubakar Kana,
Istifanus Joshua, Zainab Mohammed Idris, Yohanna Yanshiyi Dangata,
Kaduna State University, Nigeria
[email protected]
Since the evolution of health law and ethics in the 1960s, following outcry
against unbearable levels of inhumane practices in the medical
profession, medical law and ethics is now deliberately strategically central
to medical training in most developed countries. To a great extent, this
has led to the supplant of medical paternalism by patients’ autonomy in
most developed countries. However, in these countries no deliberate
attempt for strategic appraisal of doctors trained under the premedical
law curriculum on their medico-legal and ethical responsibilities has been
made. Presently, medical law and ethics as integral to medical training is
at its embryonic stage in most developing countries, including Nigeria.
Although entrants into medical school are the target, it is paramount to
address the deficiency in the subject among doctors trained under the old
curriculum, given that these doctors are currently the backbone of health
services in these countries. The present approach aims to appraise
practicing doctors with their medico-legal and ethical responsibilities. A
Cross-sectional study involving medical doctors in secondary health
institutions in Kaduna Metropolis and environs, as a pilot for the country,
will be conducted, using a self-administered questionnaire for information
on their knowledge, perception and practices of medical law and ethics.
Data will be analysed using SPSS version 17 and Chi-square test. Findings
would be used to organise appraisal courses in medical law and ethics as
part of continuing medical education for this category of doctors
throughout the country. This certificated course would be run by Kaduna
State University Centre for Medical Law and Ethics, and International
Collaboration.
Acknowledgements: Kaduna State University, Kaduna, Nigeria, for
funding.
THE WHO DEFINITION OF HEALTH: A CRITICAL READING
Marianna Nobile (Ph.D. student), Università degli Studi di Milano –
Bicocca, Italy
[email protected], [email protected]
The purpose of this research is to clarify the meaning of health, starting
from the analysis of the definition of health stated by the World Health
Organization (WHO) in 1948, in order to understand its ethical and legal
relevance.
The WHO, recognizing the influence and the importance of normative
elements in the definition of health, states that health does not
correspond merely to the absence of disease, but it is an individual and
subjective condition.
The strength of this definition of health is that it overcomes the dualistic
point of view of the self, peculiar to the traditional conceptions that
define health in purely biological terms. It maintains the intrinsic
relationship between the self and the body, considering the different
importance given to equal physical conditions by different human beings.
However, the WHO definition also shows various critical aspects. It
includes a wide range of elements that establish the human well-being.
These elements on one side are absolutely subjective, on the other side
they are strongly influenced by the prevailing cultural models.
Furthermore, it is clear that such a wide definition of health makes the
equal protection of the right to health nearly unachievable for every
State. In fact, taking into account the scarcity of resources and the many
areas of public intervention needed to guarantee a state of complete
physical, mental, and social well-being, it is plausible to conclude that any
public health system would be able to reach a similar goal.
Abstracts of Oral Presentations
WHAT IS THE ROLE OF FETAL THERAPY?
Giuseppe Noia, Policlino Gemelli, Italy
[email protected]
Fetal medicine in the past 30 years has greatly amplified his arm while his
diagnostic therapy arm did not have the same involvement of research
and clinical applications. The reasons lie in the fact that often, before a
condition of severe fetal pathology, a kind of "surrender" culture and a
form of defensive medicine have objectively curbed the ability of care to
the fetus in utero. The current state of the art is an epicritic retelling on
fetal therapy and shows that fetal conditions objectively considered
incurable, with the evolution of knowledge frameworks pathophysiology
and natural history have become treatable. The recognition as the
acquisition of new technologies has changed the natural history of many
pathological conditions means give a peculiar dignity to the applications
of science in the pre-natal, which were somewhat mutilated.
The methods of fetal therapy most famous in the world are essentially
four:
1. Transplacental therapy;
2. Guided eco-invasive therapy;
3. Fetal endoscopic therapy;
4. The open fetal surgery called "open".
These four modes of fetal therapy identified by their mutual integration
of interventions that field of fetal medicine that is rightly called integrated
fetal therapy. As in adult medicine both the arm and the arm diagnostic
therapeutic integrate with invasive and non-invasive so in the medicine of
the fetus is accomplished a set of procedures that define the fetus as a
patient to all effects. With the extension of the NIPT (non-invasive
prenatal testing) the anticipation of the diagnosis of pathologies with the
technique of NGS allows us to know as early as genetic diseases and to
anticipate therapy to the fetus.
PERSPECTIVES OF MEDICINE AND GENOMIC-OMICS
Giuseppe Novelli, University of Rome "Tor Vergata", Italy
Thanks to technology it is possible not only to study the operation of
various genes, but also fully decipher the DNA and even create artificial
cells in the laboratory created solely for the purpose to carry out research
and medical studies, environmental and energy. We can read the DNA of
many diseases, and to understand what kind of anomalies and alterations
lead cells to become ill. Scientists have figured out that knowing the
genome is not enough and that to realize the dream of predictive
medicine is essential to know the set of non-genetic factors to which
living organisms (humans) are exposed throughout life: only by combining
genomic information with non-genomic we’ll be able to understand the
origin of diseases.
ETHICAL PRINCIPLES IN CLINICAL RESEARCH:
VIEWS OF THE NURSE MANAGERS
Sanna-Maria Nurmi, Arja Halkoaho, Mari Kangasniemi, Anna-Maija Pietilä,
University of Eastern Finland, Finland
[email protected]
Background: Respect for autonomy, non-maleficence, beneficence and
justice are main principles in research ethics. Most of the studies on ethics
have focused on informed consent from the point of view of the
participants. There are few studies on the views of nursing leaders in
research.
Purpose and method: The purpose was to describe nurse managers’
perception of realisation of ethical principles in clinical research and to
evaluate the functionality of themes used in the context of nursing
management. The data of this qualitative study consisted of ten theme
interviews of nurse managers, which were conducted in three different
university hospitals. The themes of the interviews were: recruitment
process, the process of informed consent, benefits and risks of clinical
research, confidentiality and societal significance of clinical research. The
data were analyzed by content analysis.
Results: This study showed that ethically realized clinical research
requires detailed planning of the recruitment process, the subject’s
informed consent as well as the realization of confidentiality in the
research process. Good communication was seen as a prerequisite
between the stakeholders of the research process. Communication was
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also seen as a significant factor in the publicity of the results where
interaction was emphasized between the scientific community, political
decision makers and the citizens. Clinical research was seen as societal
significant action. As in the nature of pilot study the functioning of the
used themes where evaluated. The evaluation shows that the used
themes work well in the context of the research, but yet further
development is required.
Conclusions: In order to carry out a clinical research in an ethically
sustainable way, there is a need for discussion between different
stakeholders of the ethical principles.
THE RELATION BETWEEN LAW, RELIGION, CULTURE AND
MEDICAL ETHICS IN NIGERIA
Osaretin J. Odia, College of Health Sciences, University of Port Harcourt,
Nigeria
[email protected], [email protected]
Nigeria consists of over 250 ethnic groups with various customs and
values. There are three dominant religions; Christianity, Islam and sundry
traditional religions. Religion and culture control the lives and
transactions of the various groups. The Nigerian Law is based on the
English Common Law, Customary law and in some states, Islam based
sharia law. Medical ethics came into focus in the early 1960s after
independence. The law setting up the Medical and Dental Council of
Nigeria was updated in 1990 as the Medical and Dental Practitioners Act
cap 221 laws of the Federal Republic of Nigeria. Medical ethics in Nigeria
is based on the core principles of the Hippocratic Oath. The code of
medical ethics in Nigeria was revised in 1990 and 2004 but the core
principles remain the same.
Law, religion and culture of the Nigerian people are in accord with the code
of Medical ethics as it relates to abortion and euthanasia. The Nigerian
Penal code regards euthanasia as murder. Abortion, except done in order to
save the life of the mother, remains a criminal offence. However litigations
against those that commit abortion are few and far between.
This harmony between law, religion, culture and medical ethics does not
apply to the medical practices of organ transplantation, assisted
conception and related practices, and limb amputations. This paper
discusses in details the polemics and discordant dynamics of the emerging
ethical controversies and proffers suggestions for the way forward, in
order to obviate possible ethical conundrums.
THE RIGHTS OF THE UNBORN CHILD AND ARTIFICIAL
REPRODUCTIVE TECHNOLOGIES
Ignatius C. Okuta, G. Salvini Hospital, Italy
[email protected]
The Rights and Dignity of the Unborn Child
• Inalienable Fundamental Right to Life
• Rights to Identity and Substantial Continuity or Programmatic
Development
• Rights to Natural, Spiritual, Rational, Ethical, Psychological and Social
Development of the Unborn Child
• Rights to Responsible Parenthood (Procreation)
The Challenges of Artificial Reproductive Technologies (ART) and
Discrimination of an Unborn Child
1. The Challenges of Artificial Reproductive Technologies
• Laparoscopic Egg Collection (LEC) and Ethical Implications
• Nonsurgical Embryo Transfer or Lavage, Surrogate Motherhood
and the Ethical Implications
• Heterologous Artificial Fertilization and the Human Moral
Responsibility
• Homologous Artificial Insemination and the Human Moral
Responsibility
2. Discrimination of the Unborn Child
• Contraception and the Human Moral Responsibility
• Abortion and the Human Moral Responsibility
Co-Responsibility between the Unborn Child, Parents, and Physicians
(Obstetrics, Gynecologists and Biologists)
• The Unborn Child’s Ethical Responsibility
• Parents’ Moral Co-Responsibility
• Physicians’ Moral Co-Responsibility
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UNESCO Chair in Bioethics 9th World Conference
A DISCUSSION ON ETHICAL RESEARCH IN THE
HUMANITIES ANALYZED BY A BRAZILIAN RESEARCH
ETHICS COMMITTEE
Miguel Oliveira, Jr., Deise Juliana Francisco, Claudio Miranda, Luciana
Farias Santana, Nelma Araujo, Universidade Federal de Alagoas, Brazil
[email protected]
Ethics in research that is conducted in Brazil are regulated by Resolution
466/2012, a document that follows international trends encouraged by
the production and dissemination of international ethical guidelines. All
research projects involving human beings in this country are analysed and
monitored by Research Ethics Committees – Comitê de Ética em Pesquisa
(CEP). The present paper discusses some of the problems that these
committees face in analysing projects in the field of Humanities. A brief
panel of the ellaboration of research regulations involving human beings
in Brazil will be presented in order to situate the core of the above
mentioned problem. The epistemic genesis of Brazilian legislation on
research ethics is discussed, as well as the tensions that it has brought
about, in particular in the fields of Anthropology and Psychology. Aspects
such as methodology, sampling, criteria for sampling inclusion and
exclusion, participation risks, term of Informed Consent are all
problematic in these areas of research. Taking into account the recently
published Resolution 466/2012 and the analysis of various manifestations
of representative councils of anthropologists and psychologists, we
present arguments for the creation of a wider resolution that can
accommodate different epistemic and methodological proposals, still
keeping careful attention on ethics and on research participants as well as
collectivities. The discussions presented here will be based on ethical
appreciations of qualitative research analyzed by a Research Ethics
Committee located at a university in northeastern Brazil.
DISRUPTIVE EFFECTS IN PATIENTS WITH BURN
AFTEREFFECTS
Patricia Oliveira, Mental Health Argentine Association (AASM), Argentina
[email protected]
The present work develops particular qualities in the psychic
manifestations of the Traumatic Complex in burn patients with
aftereffects, as a result of a disruptive factual event that modifies the
coping capacities in the studied group, and the relevance of actions and
decisions that health professionals make with the patients. From an
analytic approach to the Trauma, it is possible the application of new
strategic interventions centered in the development of better emotional
and adaptive responses and adequate recovery of the patients. For this
purpose, it is necessary to emphasize interdisciplinary cooperation in
clinic and surgical psychoprophylaxis areas working with patients that
suffer this organic pathology, practice related to the fundamental
principles of Bioethics assistance.
ECMO: LIMITS AND INDICATIONS, A BIOETHICAL
DISCUSSION
Oto Oztekin, Dokuz Eylul University Hospital, Turkey
[email protected]
An extracorporeal membrane oxygenation (ECMO) is an extracorporeal
technique used in intensive care medicine that provides both cardiac and
respiratory support oxygen to patients whose heart and lungs are so
severely diseased that they can no longer serve their function – ECMO
may be life-saving for some patients. However, due to the high technical
demands, cost, and risk of complications, ECMO is usually only considered
a last resort therapy. ECMO is most commonly used in the Neonatal
Intensive Care Units (NICU), for newborns in pulmonary distress. At a
certain point, if the patient does not improve, ECMO could be the only
mean to sustain the patient's life, therefore leading doctors to ask the
patient or the family if they want to continue the treatment or to
interrupt it, leading to the patient's death.
The perceived quality of life for each individual is subjective and unique:
one person or parent might feel that living with severe brain damage and
needing life-long caregivers is acceptable, while another person or parent
in the same situation might think this quality of life unacceptable and
decide to suspend treatment. Doctors should explain the situation in the
most comprehensible way, without personal bias: in this situation,
personal beliefs could be in conflict with professional behavior.
ETHICS COMMITTEE OPINION ON A CASE OF SURGERY IN
AUTISTIC CHILD
L. Paciello, M.A. Zinno, I. Cerrone, R. Ferrara, M. Niola, International Office
for Bioethics Research of the European Center for Bioethics and Quality of
Life of the UNESCO Chair in Bioethics Unit - Ethics Committee “Carlo
Romano”, University of Naples Federico II, Italy
According to the Italian regulation the Ethics Committees, among their
institutional role, are also competent for treatment and care practice
issues.
The Ethics Committee “Carlo Romano” of Università di Napoli “Federico
II” was asked to release an opinion on the possibility to perform
corrective surgery for severe scoliosis in an autistic child with behavioural
problems, hyperactivity, incapable to respect rules, and from a family that
was not able to properly manage the medical care of the child.
Surgery was presented as an effective way to improve spine functionality
and patient’s QOL and survival. Without surgery, child’s survival would be
at risk, although not in the short term, because of poor compliance
caused by advanced-stage scoliosis. On the other hand surgery appeared
very risky in terms of immediate post-op pain management and future
arthrodesis 12-18 months post-op.
Any trauma in the operated segments would compromise the stability of
the whole spine.
The EC’s decision was based on the following elements:
a) risk-benefit analysis of the surgical operation proposed;
b) possibility to improve family compliance;
c) patient’s cooperation.
Whereas long-lasting intensive post-op care was required, the EC decided
to postpone surgery until the parents are able to cooperate and
guarantee proper child management, after intervention of local social
services as required by the doctors.
The involvement of specialists who can intervene on the
psychopathological conditions of the patients was also recommended.
ETHICS, BIOETHICS AND MEDICAL DEONTOLOGY
Aldo Pagni, FNOMCeO Deontological Committee, Italy
[email protected]
The History of Ethics shows that a large part of moral philosophies are
products of their times and the evolution of society. The Hippocratic
Oath, inherited by modern medicine, was based on the principles of doing
good and avoiding harm because the physician was the only technical and
moral actor who knew the human body and could decide for the good of
Man with a “paternal” approach. With the decline of paternalism,
replaced by citizens’ claims to independence and their right to good
health, Good is no longer the subjective one of biomedicine but also Good
as perceived by the individual and the supreme one of each individual’s
concept of life.
Medical deontology and the code which formalises it into rules, necessary
for Bioethical reflection on the continual redefinition of life and death of
human beings as a result of medical technology, has taken into account
the needs of both healthy and sick individuals and the requirements of
society, broadening its horizons from internal directions to the
corporation and to the attention of human sciences.
ALS AND DECISION MAKING
Debora Pain, Marcella Ottonello, Carlo Pasetti, Salvatore Maugeri
Foundation, IRCCS, Italy
[email protected]
Amyotrophic lateral sclerosis (ALS) is a severe disabling neurological
disorder that progresses to respiratory failure. Patients with ALS have
limited options with respect to treatment and inevitably face decisions
about accepting or forgoing life-sustaining therapies. Management of ALS
therefore requires developing individualized advance care planning,
particularly addressing specific decisions regarding respiratory and
nutritional support. Recent studies offer guidelines for palliative care in
ALS, including symptom management, recommendations for breaking the
Abstracts of Oral Presentations
news, the timing of decision-making, psychosocial and spiritual care. To
this purpose a multidisciplinary team, including neurologist, physiatrist,
psychologist, physiotherapist, speech therapist, social-worker is strongly
recommended. The timing of the discussion of end-of-life issues and
advance care-planning with patients and their families has to strike a
balance between the desire to know on their part, and the need to make
timely decisions about life-sustaining therapies. To help the patient in
decision-making is important the education of the subjects and their
caregivers to anticipate what to expect and what decision making
strategies they can use. Frequent and regular follow-up is recommended
to provide patients the chance to discuss deeply ALS management issues
and the opportunity to change their mind about advance directive.
Therefore, the theme of ALS decision-making and end of life decision is a
very important issue, that involves medical, psychological, spiritual,
ethical aspects and that, especially lately, be relevant in both the medical
literature and in the media in general.
DEVELOPING BIOETHICS CURRICULUM IN MEDICAL
EDUCATION IN INDIA – CURRENT PRACTISE
Princy Louis Palatty, UNESCO Chair in Bioethics, South India Unit;
Father Muller Medical College, India
[email protected]
The medical education in India incorporated only eight hours for Bioethics
education in the prevailing curriculum. Moreover, it was taught by
Forensic specialists and maybe a discerning Professor from whatsoever
discipline imparts ethical aspects on a situational basis. This system is
sporadic and inadequate, at best. The foremost regulatory body of the
country (MCI), has noted 135 hours for Bioethics but declined from
drafting curriculum and indicating the department/s concerned with this
responsibility. The individual Universities and medical colleges rather than
devise a strategy, patiently await the directives.
Since the establishment of UNESCO Chair, it was deemed to take the onus
and drafted the Bioethics curriculum, lesson plan and schedule for the
4and half year course. Moreover, the similar curriculum for the dental
and nursing was also drafted. It is heartening to mote that these curricula
have been adopted and put into practice over a year, now.
The cultural ethos, societal, ethnic and traditional aspects have been
incorporated, that makes it unique yet relevant and hence, indigenously
acceptable.
POLICIES OF NAPLES MUNICIPALITY FOR THE LIFELONG
LEARNING AND THE MIGRANTS
Annamaria Palmieri, Municipality of Naples, Italy
The main actions and measures for migrants and adult education adopted
by the Municipality of Naples will be drafted by the Councilor for the
Education.
THE NEED OF ETHICAL TRAINING FOR CARDIOVASCULAR
SURGEONS
Domenico Palombo, President, ESCVS, Italy
[email protected]
In the last twenty years there has been a great change in cardiovascular
medicine, both in the tools available to the surgeons and in the patients
demographics. The possibility to treat older and often more sick patients
comes with a cost, both monetary and ethical: not always the existence of
a tool is a good reason to use it, despite the pressure that Medical
Companies put on the surgeons and the patients as well. Cardiovascular
surgeons should be prepared to address their own moral and ethical
concern, in accordance with the current laws and in the better interest of
their patients.
FUTILE TREATMENT IN NEONATOLOGY
Roberto Paludetto, University Federico II, Italy
Many neonatologists believe that in some newborns, continuing intensive
care may be inappropriate and inhumane. Situations when disease is so
125
severe that life-sustaining treatment simply delays death without
alleviation of suffering, can render medical treatment inappropriate.
Situations when there may be survival with treatment but the degree of
impairment will be so great that the parents require withdrawing of care,
are difficult to managing. Reports of “miracle survivors”, have raised
parental expectations to the level that a good outcome is assumed for
every baby born after 23 weeks’ gestation, and in this case parents may
request that everything be done for their babies and may not agree on
discontinuations of futile treatment. On the other hand many
neonatologist overwhelmed by legal litigations, are strictly following the
rules of defensive medicine, e.g. with resuscitation of anencephalic baby
and futile transport and treatment of 21-22 weeks’ gestation babies.
Managing this kind of cases is challenging and requires competence,
training and good communication between doctors, nurses and parents.
As in many other NICU all over the word, in the NICU of the University
Federico II of Naples, with about 300 admissions a year, are rapidly
increasing difficult cases involving ethical and legal aspects. Some of these
cases were discussed by the local Ethical Committee and the NICU team
did take great advantage from these discussions.
DOES THE 'HEALTH BRAIN DRAIN' POSE ETHICAL
CONCERNS? IF SO WHAT CAN AND SHOULD BE DONE
ABOUT IT?
Theodore Pang, UK
[email protected]
The health brain drain is the outward migration of health workers from
the public healthcare system of, typically, developing countries. This
phenomenon occurs against the backdrop of a massive shortage of health
workers in developing countries – of the 57 countries identified by the
WHO as having reached crisis point, 36 are in sub-Saharan Africa– and is
picking up in pace (http://www.irinnews.org/Report/92949/AnalysisPlugging-the-health-worker-brain-drain,
http://www.migrationinformation.org/feature/display.cfm?ID=271). The
question of whether the health brain drain poses ethical concerns is thus
pertinent and timely, because if so, then doubts are cast on the
compatibility of existing practices with ethical standards.
This paper bridges ethics and the social sciences to demonstrate how the
health brain drain does pose ethical concerns. Specifically, I draw on
accessible concepts in economics to inform our ethical assessment of the
problem. I first establish that the health brain drain poses ethical
concerns because of the scale and nature of the damage to developing
countries already facing critical scarcity of resources. I then highlight a
deeper ethical concern: since solutions to remedy the drain generally
involve difficult trade-offs (allocating scarce resources between two
groups facing insufficiency; deciding between liberties and access to
healthcare), the phenomenon makes it difficult to take action – thus
raising the deeper concern of whether we should even act.
This ethical assessment of the health brain drain has implications on
institutional factors causing or contributing to the problem, which may be
addressed by drawing on economics for inspiration to create sustainable
solutions to this ethical conundrum. I introduce recommendations across
three broad categories: global governance institutions, developed countries
and developing countries. I conclude that the focus, going forward, should
not be whether we should act, but rather how we should act.
AUTONOMY OF PROFESSIONAL PRACTICE AND
CONSTRAINTS OF HEALTHCARE ORGANIZATIONS
Antonio Panti, OMCeO Florence, President; FNOMCeO Deontological
Committee, Italy
[email protected]
Since ancient times, the physician has guaranteed citizens’ interests,
observing the precepts of deontology and therefore acting knowingly and
conscientiously.
Today, however, most physicians operate as employees of private or
prevalently public administrations. As employees, doctors have precise
legal roles and are subject to the obligations arising from their functions.
And if these obligations prove to be in contrast with the values and
regulations of the Deontological Code? Doctors must always defend the
interests of the patient; moreover his moral conscience may forbid him to
perform the treatment which is in contrast with his professional ethics.
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UNESCO Chair in Bioethics 9th World Conference
This is an extremely modern day and important dilemma, in extreme
cases requiring difficult decisions, which must be the subject of careful
reflection in the context of the medical profession in order to give
directives which respect deontological values and are adequate for the
anthropological evolution of social customs.
GENETIC DATA PROTECTION AND REUSE: ETHICAL
IMPLICATIONS AND LEGAL ISSUES
María Magnolia Pardo-López, University of Murcia, Spain
[email protected]
Scientific advances related to genetics research at the same time shed
hopes and doubts of various kinds for Society. The promising healing
possibilities – expected to be almost inexhaustible – have a counterpart in
the serious and questionable moral implications that genetic modification
entails for many scientists and lawyers. And that is just one example.
The genetic databases are a peculiar kind of databases. On the one hand,
legal systems usually provide a fierce protection for them, because
genetic and the rest of health personal data are considered specially
protected ones, given their sensible nature. Furthermore, it is
unquestionable the importance that information may represent for public
health, thereby overcoming a purely private interest.
This paper aims to make a critical analysis of the fragmented response
given by Spanish legal system to genetic information in a European
context, and the ethical position that this seems to imply. This study
addresses the need for informed consent in order to carry out genetic
research; the sometimes troublesome relationship between genetic
information, personal privacy and family privacy; the re-use of this
information and the requirements for it in that case; the possible social
discrimination that may be incurred in the hands of this innovative
research; and legally permitted practices nowadays.
HOW TO LEARN BIOETHIC IN SCHOOL OF MEDICINE
Siti Pariani, Airlangga University School of Medicine, Indonesia
[email protected]
Medical doctor is one of provider in the health care system. Bioethics is
relatively new in the curriculum of the schools of medicine in Indonesia.
When they are still a student, they learn bioethics which a modul and
class teaching. However when they work as a provider they should
conduct bioethics in the real job situation (hospital, clinics, laboratorium,
field, etc.).
Then, teaching bioethics should not only in cognitive and attitude ways
but also in the conducted psychomotor.
Are there another ways to give the student chance learn and experience
bioethics which role playing and role model?
THE INTERDISCIPLINARY ETHICS COURSE AT HOWARD
UNIVERSITY HEALTH SCIENCES CENTER: A MODEL OF
ETHICS EDUCATION FOR IN THE 21ST CENTURY©
Assya Pascalev, Howard University, USA
[email protected]
Introduction: Ethical decision-making is integral to the practice of
medicine and ethics education has become a standard part of the medical
curriculum. Yet, there are differences in the way ethics is taught to
medical students in terms of content, teaching methods, when it is taught
and the criteria for measuring the ethics competence of students.
Objective: This presentation introduces a unique model of ethics
education of medical and health sciences students at Howard University,
USA. Our goal is to publicize the model, solicit peer feedback and
stimulate a broader discussion about alternative models and good
practices of ethics education.
Content and method: Review and analysis of the teaching methodology,
syllabus, objectives, grading criteria and structure of the ethics course,
and the student and faculty composition by discipline. The Bebeau grid
method for case analyses is introduced.
Discussion: The course was developed by faculty members of the Health
Sciences Center, HU and has been successfully implemented for two
decades. The course is interdisciplinary in nature including students and
faculty from medicine, dentistry, pharmacy, nursing and allied health
sciences. It recreates the multidisciplinary clinical environment, in which
health providers operate. The course has a balanced structure with equal
time for didactics (large lectures) and active learning (peer-facilitated case
analysis in small discussion groups). The course develops critical thinking,
collective decision-making skills and consensus building in addressing
moral dilemmas in medicine. Students learn the Bebeau case analysis
method, the tools of ethics argumentation and logic which they apply to
both case analyses and research. The limitations of the course are fiscal
support, space, on-going need for qualified faculty, low number of credits
and disparate student skill levels.
Conclusions: The HU Ethics course is a successful model for developing
ethics competences in future health professionals. It provides a solid
foundation for tackling moral challenges in clinical practice and research.
The applicability of the model outside the USA is to be determined.
©
Howard University 2013
WHEN THE URGE TO CHANGE THE APPEARANCE OF
THE BODY TOUCHES THE ABERRATION:
ETHICAL LIMITS IN AESTHETIC MEDICINE
M. Paternoster, V. Graziano, F. Policino, P. Di Lorenzo, C. Buccelli,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
Totally aesthetic surgery refers to a variety of operations performed in
order to enhance a certain structure or anatomy that is already normal.
Today there is an increasing demand for invasive forms of this kind of
surgery, as our culture has become more concerned with image and
appearance.
Media messages and misleading advertisements do influence the
consumers seeking to improve or enhance their appearance (mainly
among the younger who are more influenced by marketing tactics to
promote aesthetic treatments and by plastic surgery reality television).
In some cases the urge to change the appearance of the body touches the
aberration (well-known worldwide the cases of Cindy Jackson, Nileen
Manita, Dennis Avner, Jocelyn Wildenstein, Lorna Bliss, Nadja Suleman,
Sheyla Hershey, Hang Mioku).
In this contest plastic surgeons are faced with ethical dilemmas about
whether to perform operations on patients to enhance or modify what is
normal rather than restoring health to the diseased.
Elective aesthetic treatments, which may lead to long-term adverse
effects on body function and health, produce serious ethical problems for
the surgeon and involve potential conflict of interest, on both conscious
and subconscious levels, that can sidetrack ethical decision-making.
Nonetheless, it is concerning that plastic surgery literature is substantially
lacking in ethical discourse.
Respect for patient autonomy is a fundamental principle in bioethics,
however, when procedures are exclusively cosmetic, questions as to the
ethical legitimacy of such requests and enhancements arise.
In general, competent adults have the right to decide whether they wish
to undergo a surgical procedure or not.
The patients' wishes and thereby their right to an informed decision must
be respected, provided they have been given sufficient information.
However, in the case of certain types of purely elective cosmetic
treatments (e.g., ethnic facial plastic surgery, transforming facial
characteristics interventions, cosmetic genitoplasty, totally cosmetic
operations in children and adolescents) the patient’s right for autonomy
may contradict the physician’s principle of non-maleficence.
This principle ensures that an aesthetic surgeon never acts against the
patients' best interests or in a way that may harm a patient.
The role of provider demands that prudent guide these treatment options
and not only succumb to patient demands and those of society.
For example ritual genital cutting for women remain controversial (and in
some countries unlawful) also when performed on adult competent
consenting women but towards genital cosmetic surgery the society (and
the law) has taken a very permissive stance.
In this regard, it is our opinion that undertaking surgery to improve a
patient's self-image and esteem is acceptable, but surgeons may decline
to operate on patients if they do not believe that the surgery is in the
patients’ best interests.
However, defining the patient’s best interests can be difficult, for this
reason, patients must undergo thorough pre-operative psychological
assessment and counseling before surgery.
Abstracts of Oral Presentations
It is also essential to create an educated and informed public about the
ethical issues in the aesthetic surgery field.
Finally it is appropriate that strict regulations to govern some kind of
surgery will be developed in cooperation between the major scientific
societies of plastic surgery and bioethics.
Some may argue that adherence to such regulations creates a doctorpatient relationship that is rooted in paternalism, which is in drastic
contrast with a doctor-patient relationship that is rooted in patients’
autonomy, characteristic of most other operative interventions.
But it should be remembered though that the principal objective of the
medical profession, as well as plastic surgery, is to render service to
humanity with full respect for human dignity.
ANATOMICAL SPECIMENS OF HUMAN ORIGIN ON
DISPLAY: DIE AND BECOME A PIECE OF ART AND RICH
M. Paternoster, S. Romano, G. Addeo, L. Paciello, V. Graziano,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
“Plastination” is a patented revolutionary technique of tissue preservation
introduced by Gunther von Hagens that offers a means of keeping
anatomical specimens with plastic or silicone rubber.
Plastinated specimens require minimal aftercare and can be stored on
shelves or in display cases.
In the “Body Worlds” exhibitions, human cadavers of donors who gave
informed consent preserved through plastination are playfully posed and
exposed to public in a simultaneously entertaining and educational way.
Although the public was fascinated by “Body Worlds” and the exposition
of the cadavers claims an educational mission for bodily knowledge, the
plastination phenomenon has raised considerable ethical debate about
treating human cadavers as artwork.
Some people, including anatomists, expressed their moral objection to
this type of unconventional bodily display, arguing that the educational
aims of the exhibitions are ambiguous and that the unusual positioning of
the figurative plastinates violate the personal dignity of the donors.
The procurement of bodies and the donor's self-determination are
another source of controversy.
The patented “plastination” process involve a multi-million dollar business
in China in which several hundred human cadavers are dissected and
preserved each year, for exhibitions as well as for use in health profession
training.
Some people argue that this business expose vulnerable groups and
unclaimed bodies to dissection although these accusation have not been
proven.
Many people instead think that plastination has revolutionized the way in
which human anatomy can be presented to public and that the use of
plastinated bodies has improved the quality of teaching and learning of
anatomy.
This article is an attempt to further this debate.
It is our opinion that the rejection of the plastination phenomenon is
unwarranted.
However we think that use of anatomical specimens of human origin on
display in the public domain is acceptable only for educational purposes,
but when the educational aspects are overshadowed by entertainment
and economic value, the use of cadavers is not compatible with respect
for dignity of the donors.
THE BIOLOGY OF EMPATHY AND ITS ROLE IN GOOD
ETHICAL PRACTICE IN HEALTHCARE DELIVERY
Esther B. Patrick, A. A. Jimoh, I. Abdu-Aguye, B. A. Chindo, Z. Abdullahi,
D. Mallam, Kaduna State University, Nigeria
[email protected], [email protected]
Empathy is the process through which one attempts to project self into
another’s life and imagine a situation from his or her point of view. Our
ability to empathize varies because empathy develops with contributions
from various biologically and environmentally based factors. It is a
mutable trait that can be nurtured. Empathy plays a vital role in the
healthcare system as it enhances the provider-Patient relationship and
therapeutic efficacy and decreases patient anxiety. Empathetic
communication is not only beneficial to the patient, but also to the
127
healthcare provider, and the healthcare team as a whole; as it promotes
teamwork, bridges differences and allows collaborative learning to occur.
Unfortunately the healthcare education and work environment
emphasises on emotional detachment, short episodic office visits where
productivity is valued and rewarded financially, and doctors who don’t
see as many patients as their peers are derided as slow and inefficient.
Also the healthcare environment and educational process overly
emphasize on technological competence, curing disease rather than
healing the patient or the economic aspects of medicine. This approach is
not in tune with the emphasis on empathy in therapeutics. Thus this
review paper will examine the biological basis of empathy and its role in
ethical health care delivery.
Acknowledgements: Kaduna State University, Kaduna, Nigeria, for
funding
POLITICAL APPRECIATION AND JUDICIAL CONTROL IN
ITALIAN LAW ON ASSISTED REPRODUCTION
TECHNOLOGIES
Andrea Patroni Griffi, Second University of Naples, Italy
[email protected]
In a Constitutional law perspective, Bioethics is mainly a question of
balancing fundamental rights protected by the Constitution. The latter
allows different implementations of these rights, likewise the Parliament
should find a right balance of human rights and so assure an equilibrate
discipline of the main problematic topics of Bioethics.
Unfortunately, some policies seem to be unreasonable, even if taken by
the national legislator. There is an important judicial scrutiny of the
concrete reasonable exercise of the margin of political appreciation.
So Bioethics becomes a constitutional question when Parliament makes
an "extreme" political choice, that could not satisfy the balancing test for
a reasonable and constitutionally equilibrate solution in the respect of all
fundamental rights involved.
Italian law about embryos and assisted reproduction technology (ART) is
very significant in that sense.
The ART ACT 2004 includes contradictory rules with special reference
within abortion law of 1978. In our legal system we have rules that seem
expression of conflicting political choices. The guarantees of the beginning
human life as embryo should have reasonable balancing with
fundamental rights.
The European Court, the Italian Constitutional Court and other national
judges have all played a crucial role in "rewriting" the subject matter of
the beginning of the human life and in accomplishing fundamental rights.
The judicial protection of fundamental rights has been the necessary reply
to a bad law generated by a bad policy
In this scenario, it could be very interesting to analyze the precedents
especially of Italian Constitutional Court and European Court of Human
rights (Costa Pavan) concerning the most debated choices made in this
field from the Italian Parliament, so to underline the correct relationship
between judicial control and political questions in front of a law so
strongly politically oriented.
HISTORICAL DEVELOPMENT OF MEDICAL
DEONTOLOGICAL CODES IN ITALY
Sara Patuzzo, University of Verona; FNOMCeO Deontological Committee,
Italy
[email protected]
In 2011 CEOM (European Council of Medical Orders) has decided to
update the Principles of European Medical Ethics: the “European Charter
of Medical Ethics”, renowned as “Kos Charter” (Kos, Greece, 10 June
2011), has been adopted. Aim of this European Charter was to lay the
foundations for a European Code of Medical deontology. To hit the mark,
an important task is examining the Codes of Medical deontology actually
adopted by European countries. In Italy FNOMCeO (National Federation
of Medical Orders) has issued in 2006 a Code of Medical deontology that
has roots in ancient age. The reconstruction of its history is the first move
to analyze and evaluating the development of Italian Medical ethics and
of Italian Medical deontology, in order to relate them with European
Medical ethics and European Medical deontology.
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UNESCO Chair in Bioethics 9th World Conference
ADVANCED TREATMENT DIRECTIVES:
A COMPARATIVE STUDY BETWEEN ITALY AND BRAZIL
1
2
Marilia Pedroso Xavier , Luciana Pedroso Xavier
1
University Center of Curitiba, Brazil
2
Federal University of Paraná and University Center of Curitiba, Brazil
[email protected], [email protected]
In Brazil, an intense debate has been held on the importance of having a
dignified death, heeding to the wishes of the patient in the possibility of
orthonasia. In this sense, against a backdrop of absolute normative
vacuum, the Brazilian Federal Board of Medicine edited Resolution
1995/2012, that regulates advance health care directives. The goal of this
paper is to analyze comparatively Resolution 1995/2012 in light of
Advanced Treatment Directives edited by the Italian National Bioethics
Committee in 2003, identifying the dangers left by the many gaps of the
Brazilian statute, among which should be noted: i. the absence of a
requirement that advanced health care directives be made through
writing (through either a living will or health care proxy); ii. the lack of a
national database to keep track of these directives; iii. the absence of a
glossary that would render the terms adopted in the Resolution
unambiguous; iv. the (im)possibility of appointing more than one
attorney, as well as what should be done when the appointed attorneys
disagree on the course of medical treatment; v. the absence of a clear
legal limit to the contents of an advance health care directive, seen that
the Resolution establishes only that they should observe the Brazilian
Code of Medical Ethics; vi. the (im)possibility of emancipated minors
signing an advance directive; and vii. the absence of penalties applied to
the medical team in case of infringement of the directives.
PLAYING GOD AT AN INTENSIVE CARE UNIT: THE
BRAZILIAN CASE OF DR VIRGINIA DE SOUZA
Marilia Pedroso Xavier1, Luciana Pedroso Xavier2
1
University Center of Curitiba, Brazil
2
Federal University of Paraná and University Center of Curitiba, Brazil
[email protected], [email protected]
The city of Curitiba, Brazil, has become known worldwide for what was
called by the Irish Independent “one of the world's worst serial killings”
ever. Dr. Virginia Soares de Souza was arrested on February, 2013,
because of her patients suspicious deaths. Supposedly, she administered
muscle relaxants to her subjects, which increased the patients' need for
artificial respiration. Then she reduced the flow of oxygen, resulting in
death caused by asphyxia. De Souza’s arrest was ordered after a
complaint based on seven deaths, but the doctor may be responsible for
over 300 murders. Other reports say that over 1.700 deaths on the
hospital may be related to the physician’s practice. The reason for such
hideous acts was, supposedly, the need to free space and to reduce costs
at the Evangelical Hospital. Based solely on official documents, and
avoiding the media coverage, this study aims to present the legal
implications of the charges, according to Brazilian Law, for Dr. De Souza
and other professionals involved in the case. Furthermore, we question
which bioethical principles were put in check and seek to clarify how
issues related to euthanasia and orthothanasia are treated in Brazil.
THE CREATION OF AN ETHICAL CODE ON THE LIMITS OF
INTIMACY AND TOUCH IN COMPLEMENTARY MEDICINE
Maya Peled-Raz, International Center for Health, Law and Ethics; School of
Public Health, University of Haifa; Bnei-Zion Medical Center, Israel
[email protected]
Despite the high prevalence of complementary medicine (henceforth CM)
use in Israel in recent years, the practice of CM has not yet been regulated
in Israel in any way.
This lack of regulation leaves the public vulnerable to harm, caused by
non-sufficiently- trained practitioners. It also leaves the CM Practitioners
in a regulatory vacuum, with no real behavioral guidance.
In an attempt to diminish this vacuum, the Section for Ethics in CM of the
International Center for Health, Law and Ethics at the University of Haifa,
has initiated a process aimed at the creation of an ethical code for CM
Professions. The code's expected goal has been to help in the
construction of a safe therapeutic environment for CM patients and
practitioners, via self-regulation.
The code had been constructed through a Delphi process, conducted in
2010-2012, in which took part representatives of different CM
associations, representatives of the major schools for CM, representatives
of centers for victims of sexual assault, representatives of the Israeli
HMOs, and representatives from the academia, the medical profession as
well as ethicists and legal professionals.
The Delphi program integrated three working groups:
Group A. strived to create an ethical code, aimed at regulating the
acceptable limits to intimacy and touch in CM encounters.
Group B. strived to construct an educational program that would facilitate
the understanding of the code and its adoption.
Group C. examined ways to enhance the authority and operation of ethics
committees inside the different CM therapists associations, as a way to
enforce the code's guidance.
In my presentation I will describe the major obstacles encountered in the
process, and attempt to analyze its outcomes.
MEDICUS AMICUS:
PROFESSIONAL ETHICS IN THE ANCIENT WORLD
Carmen Pennacchio, University "Federico II" of Naples, Italy
[email protected]
Celso, proem. 73: cum par scientia sit, utiliorem tamen medicum esse
amicum quam extraneum, proposes an innovative interpretation of the
work of the medicus. It is the figure of the medicus gratiosus, kind,
pleasant, courteous, but also authoritative and influential to this, with
virtues such as reliability and mercy, uninterested in money, worried
about his patient and always present at critical moments.
In ancient Roman medicine there is the concept of medicus amicus,
peculiarity clearly emerges in Seneca the Younger’s work and it refers to a
specific aspect of the medical practice, especially during the first imperial
era.
Seneca the Elder, analysing the work of a physician, refers an event about
the difficult relationship between father, son and stepmother, because
the son-doctor can not cure the stepmother.
There are two versions of this event. In fact Luciano di Samosata and
Seneca the Elder describe this strong controversy between father and
son, but Luciano refers to the more “technical” side of Greek medicine,
Seneca regards the specific aspects of medicus amicus.
The figure of the medicus amicus describes a relationship of friendship
and sympathy between the physician and the patient, highlighting the
moral aspect of ancient medicine as the most important.
LEGUM SERVI SUMUS UT LIBERI ESSE POSSIMUS……
(TO FREE OURSELVES WE NEED TO BE SLAVES
OF THE RULES…….)
Alessandra Pentone, Liliana Innamorato, Francesco Introna,
University of Bari, School of Medicine, Italy
[email protected], [email protected],
[email protected]
In ancient Greece, the Spartans used to abandon their male newborns
after examination for vitality if they were deemed unfit. The tradition tells
that all unfit infants, such as weak, sickly, deformed or mentally retarded,
were thrown into a chasm of mount Taygetus, just like the worst of
criminals. Nowadays things seem to be quite unchanged. While in the so
called undeveloped countries even children with harelip or albinos are
thought to be God’s abomination, in the developed countries there are
specific rules to defend the rights of disabled people. Despite all the
utopian principles inspiring these kinds of laws, sometimes the main
problem debated is how to call these people, disabled and not
handicapped, because “handicapped” will be insulting. Most of us totally
ignore that a hidden population of persons try to live a very difficult life,
not only because the handicap itself, but especially for the lack of
sensitivity and lack of communication in our society. Sometimes we
discover that such realities are just out of our grasp when we are
personally touched by a disability after an accident or a disease. What are
the rules to protect the rights of disabled persons when nobody cares
about them? When there is no comprehensive education, no
understanding, no sensitivity to the problem at hand, real integration will
Abstracts of Oral Presentations
not be possible. So, as Cicero said: “To free ourselves we need to be
slaves of the rules” but Hegel reminded us that: “We will be really free
only if each of us will be (free).”
OVER RELIANCE UPON DIAGNOSTIC AIDS AND ITS
IMPLICATIONS UPON OUR PRACTICE AS PHYSICIANS
Zvi Perry, Yair Glazer, Uri Netz, Odit Gibor, Solly Mizrahi, Michael Bayme,
Leonid Lantsberg, Eliezer Avinoh, Soroka University Medical Center, Israel
[email protected]
In the age of modern technology, in which we as physicians have an ever
growing armentarium of high-tech imaging and laboratory tests, which we
tend to rely upon, one must remember that all these high-fidelity tools
are nothing but that – tools. Tools that are there for aiding us in decision
making, and in understanding the ailments of our patients. They also do
not unburden us of our responsibility of conveying the disease or it's
implication to our patients. We would like to present 2 different cases of
complex cases (i.e or real patients) in which labs and imaging has led us
astray, and how we feel one should combat these problems.
The first case involves a 68 years old woman, suspected of having
cholangiocarcinoma or a pancreatic carcinoma based on a high CA 19-9
level and painless obstructive jaundice. The patient was eventually found
to suffer from Mirizzi syndrome.
The second case involves a 43-year-old female who admitted to the ER
with abdominal pain that started a day before admittance. An abdominal
CT scan demonstrated an enlarged uterus, ovarian cysts, a small
hypodense lesion in the liver and suspected peritoneal spread with
omental cake formation involving the anterior abdomen and colon.
Omental cake is an ominous sign, and is mainly caused by malignancy. To
our surprise, the source of the omental cake in the current case was
sarcoidosis.
Both cases exemplify our tendency to rely upon diagnostic aids and the
danger engulfed upon solely relying on them.
END OF LIFE CARE: ECONOMICS AND MANAGEMENT
ASPECTS
Giovanni Persico, Italy
Context: With the acceleration of pressures on health care costs,
considerably more attention has been focused on proposals to control
costs at the end of life. Uncontrolled health care costs will undermine
improvements in access and coverage in the long-run, and will also be
detrimental to other important social programs and goals. Hospice care
were developed to ensure patients’ autonomy and to provide high
quality. At the same time, clear understanding of what patients, families,
and health care practitioners view as important at the end of life is
integral to the success of improving care of dying patients.
Objective: To evaluate the impact of end of life care on the cost of Italian
public health care and the factors considered important at the end of life
by patients, family and other care providers. The aim is to offer an ethical
perspective on health care cost control in the context of end-of-life, an
area considered by many to be a principal candidate for cost
containment. However, the policy and ethical challenges may be more
difficult in end-of-life care than in other areas of medicine.
Methods: Analysis of cost effective and beneficial end-of-life care from
the perspective of an Italian public health manager linked with the values
of dying patients, their families, and caregivers.
Results: There are many improvements in practice-such as increased
access to hospice and palliative care. Anyway, there is too much work to
do on advance directive documents, on policy and organizational
incentives, on cultural attitudes to reduce the use of ineffective
treatments and on communication among health professionals, patients,
and families in the end-of-life care planning and decision-making process.
Advance directives and hospice care have been proposed ad methods of
reducing medical costs at the end of life; both can transform “good ethics
(into) good health economics”.
Conclusions: The end-of-life care issues need to become an integral part
of the public health agenda. Although end-of-life discussions can be
difficult, they have to become routine between doctors, nurses, and other
key health providers and their patients. The answer is: can we
simultaneously respect patients’ autonomy and save money? When we
129
link ethics and economics to prevent futile care, everyone wins, the
society as a whole.
LONG LASTING ENDEMIC FLUOROSIS IN THE VESUVIUS
AREA POPULATION: A MATTER OF ETHICS?
P.P. Petrone, A. Russo, V. Folliero, G. Quaremba, P. Di Lorenzo,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
The study of ancient pathologies can be adopted as a key tool in assessing
and tracing several diseases from past to present times. Long-term intake
of high doses of fluoride can have adverse effects on human health.
Bones and teeth are the target organs of fluoride, and tend to accumulate
it with age.
Endemic fluorosis induced by high concentrations of fluoride in water and
soils is a major health problem in several countries, particularly in volcanic
areas where high amounts of fluoride in drinking water are typically found
due to contamination from ash deposits. This is the case of the SommaVesuvius surroundings.
Here we describe the features of endemic fluorosis in the Herculaneum
victims of the 79 AD eruption, resulting from long-term exposure to high
levels of environmental fluoride. Our observations on dental and skeletal
features of this ancient population suggest the endemicity in this area of
fluorosis already from Roman times, which still occurs today. Our findings
merged with the results of a recent clinical-epidemiological investigation
in schoolchildren from the Vesuvian towns reveal a permanent fluoride
health hazard for the resident population. Considering that the maximum
fluoride content allowed in tap water by local authorities in the last
decades has exceeded the international guideline values, the present
parameters might be reconsidered accordingly, while the persistence in
adopting such parameters would result in an enduring health risk at sociosanitary and economical scale. The health hazard of fluorosis, now
recognized to be endemic already 2000 years ago, seems to be widely
underestimated by the political and sanitary authorities, which are
responsible for the public health of the resident population. Hence, we
stress the need to implement cognitive studies on the effects of fluorosis
on the health and quality of life of residents in the Vesuvius area, while
should be appropriate to start an information campaign, to be launched in
order to let know the risks to which the people is exposed.
PALAEOBIOLOGICAL RESEARCH AND ETHICAL
IMPLICATIONS FOR TREATMENT, STUDY AND
CONSERVATION OF SKELETAL HUMAN REMAINS
P.P. Petrone, G. Zambra, C. Leone, V. Graziano, G. Quaremba,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
Investigations of Physical/Forensic Anthropology and Forensic
Archaeology are usually focused on survey, excavation, site record,
laboratory analysis and documentation of human skeletal remains.
Starting point are mostly archaeological discoveries of ancient necropolis,
or forensic investigation of recent sporadic findings. The aim of this kind
of research is to define a detailed biological profile of each individual, and
at a larger scale to reconstruct the health as well as the cultural and socioeconomic context of an entire population. In forensic investigations,
personal identification of more or less complete skeletal remains coupled
with analysis of the context of discovery – mostly a crime scene – stays as
the most important goal.
The palaeobiological database can be acquired by means of analysis and
record of key osteological and dental evidence, mainly related to: a.
anatomy and gross morphology; b. histomorphology and histopathology;
c. sex determination by secondary sexual traits; d. age at death by cranial
and postcranial traits and histology; e. stature by skull morphology and
long bones length; f. health status by pathological lesions and anomalies;
g. daily and work-related activities by occupational markers; h. genetic
profile by DNA testing and amplification; i. blood group testing in the A, B,
0 system by specific antigens; j. diet by bone amount of oligoelements; k.
metabolic and other pathologies by physical-chemical assessment of trace
elements; l. other significant biopathological markers. The picture might
be completed by site taphonomic evidence related to ante, peri and post
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UNESCO Chair in Bioethics 9th World Conference
mortem anthropic and natural events involving the corpse of the
deceased, as well as by physical-chemical parameters and/or diagenetic
processes resulting from the burial environment.
The purpose of a laboratory of osteobiology and physical/forensic
anthropology, and in particular the study and manipulation of ancient or
past recent human skeletal materials, like in other research fields is a
matter of organization and expected results in terms of quality vs.
quantity. In any case, no one should overlook the ethical aspects implied
by such research activities, and not only those ones related to an
appropriate "treatment" of the human remains. Bioanthropological
studies are a unique opportunity to open a window in the past way of
living and human being, often crucial to an improved understanding of
the mechanisms of the origin, diffusion and evolution of several diseases
from past to present times. However, any anthropological study should
never miss to consider the very essence of the primary object of his
studies: the human being himself.
the risk of wastage or “duplications”. The dispersion of resources and
disorganization are, in fact, among the major problems linked to the
sphere of Cooperation and Volunteering.
The third phase will deal with connections and working in harmony, being
well aware at this point of the objectives, the resources and the weak
points of the various projects. In the immediate future there will
therefore be the offer to the NGOs and the volunteers who will wish to
take advantage of the views of the Commission, to include feasibility
studies, epidemiological evaluations, clinical research regarding the types
of intervention possible, applying to the pathologies present on the
territory and the means available. A model will be presented of a training
intervention on the part of experts from Italian universities with the
creation of real and true schools of specialization and training for
specialists and local personnel. Therefore working directly with the local
human resources which in their turn can in the future have a developing
role in “training”.
DENTISTRY AND DISABILITY
INTERNATIONAL COOPERATION IN EMERGENCY
SITUATION: VOLUNTARISM – ETHICS – ORGANIZATION
Gabriela Piana, University of Bologna, Italy
[email protected]
Recent advances in medicine lead to an increased life expectancy of
disabled patients. Therefore the oral health of individuals suffering from
physical disability and mental conditions is a goal shared by families and
healthcare providers, which aims at improving their quality of life.
These patients are at increased risk for oral diseases (caries, periodontal
disease) and present specific conditions, such as dental anomalies and an
altered pattern of craniofacial growth. In some cases, oral health can have a
direct impact on general health (e.g. congenital heart disease, malignancy).
Providing appropriate dental care to disabled patients is challenged by many
aspects, such as underestimation of the oral health importance in cases of
severe systemic diseases and the lack of specialized structures to apply
prevention and treatment. In view of the mentioned reasons, dental care of
individuals with special needs requires additional clinical training,
knowledge in general medicine and an adequate psychological approach, in
addition to a multidisciplinary team work.
The lack of primary prevention and timely therapeutic care may increase the
need for complex treatment and exacerbate the systemic condition. The
main objective is to reduce the need for long/costly treatment and risks
related to general anaesthesia, usually indicated in uncooperative patients.
It is a task of the family doctor to refer special needs patients, early in their
life, to the dentist for their first dental visit to start a prevention program
customized to the patients’ needs and based on specific guidelines.
SIOT – COMMISSION FOR VOLUNTEERING AND
INTERNATIONAL COOPERATION
1,2
1,2
1,2
1,2
1
M. Piazza , F. Santolini , R. Capanna , M. Saccomanno , A.Piccioli ,
1
P. Cherubino
1
SIOT – Italian Society for Orthopaedics and Traumatology, Italy
2
SIOT – Commission for Volunteering and International Cooperation, Italy
[email protected]
The Italian Society for Orthopedics and Traumatology (SIOT) wishes to
outline in this paper the organizational efforts made to arrive at a
rationalization in the orthopaedic-traumatological field of international
cooperation and volunteering in Italy. SIOT is among the first scientific
societies to adopt an apposite Commission for Volunteering, composed of
a number of leading Italian experts in this subject, all with significant
experience in the sector.
Over a period of many years, Italian orthopaedic surgeons and
traumatologists have volunteered their services in countries needing
medical assistance. These contributions all took place, and still take place,
under the form of individual commitment, or from medical schools. The
Commission’s first act, therefore, has been to monitor all the those
registered who, at a personal level or those working with NGOs have been
involved with, or wish to be involved with ortho-traumatological projects
in the field of international cooperation-volunteering.
This first phase has led to a recognition of what exists today in Italy, and
has produced an important “snapshot” which is extremely useful in
understanding this crucial and multi-faceted world. All this is preparatory
before the second phase which must rapidly lead to a systemization and
rationalization of the use of both general and human resources, without
Maurizio Piazza1, Elio Sena2
1
“S. Maria Goretti” Hospital Latina, Italy
2
C.S.M. ASL RM/A, Italy
[email protected]
The Authors outline the journey that led them to a definition of
ORGANIZATIONAL ETHICS, through reference to personal experiences not
only of a scientific nature.
Dr. Elio SENA, who will analyse the relationship between ETHICS and
EMPATHY in a wider sense during another intervention, in this talk will
examine the theme of psychological dynamics in action during any given
work project; Dr. M.PIAZZA will focus his intervention on organizational
aspects, evaluated from a pragmatic and surgical point of view. The
intervention will revisit the theme of the ethical-decisional evaluation
criteria acquired through interactions with people met during various
missions (through the organization CUAMM Doctors for Africa), in
addition to the relative programmes.
The necessity to pre-establish ethically sustainable decisional criteria,
which enable the allocation of resources to specific projects and
predefined typologies of classes of patients will also be underlined. These
criteria will be extended also to the reality of European countries, where,
in a period of necessary public cost cutting, and therefore cuts to
healthcare, organizational ethics can ensure cover for all necessary cases
only if it is based on a pathway which includes the following passages:
Ethical Analysis of Needs – Projects and Programmes – Ethical
Management and the Allocation of Resources – Control of the Results and
Correction of Choices made. Moreover the contribution will highlight that
healthcare that favours a type of “thaumaturgy” Collaboration between
Doctors and Patients (ensuring in primis support for the social classes
more exposed to the economic crisis) is the only solution capable of
creating a solid basis for a non-conflictual relationship, safeguarding
doctors from the excesses of legal medical contestations.
Finally, the Authors will outline the possibility for the diffusion and
affirmation of such an ETHICAL – ORGANIZATIONAL vision in programmes
and future projects relating to VOLUNTARISM – INTERNATIONAL
COOPERATION.
ANTIBLASTIC DRUGS MANIPULATION IN ONCOLOGICAL
DEPARTMENTS: ENVIRONMENTAL CONTAMINATION
LEVELS, EXPOSURE RISKS, FORMATION/INFORMATION
ROLE AND POSSIBLE CONSEQUENCES FOR THE SANITARY
PERSONNEL
M. Pieri, A. Acampora, P. Di Lorenzo, M. Paternoster, M. Niola,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
[email protected]
Background: Many cytostatic drugs commonly used in anticancer
therapies are classified as potentially carcinogenic, mutagenic or
teratogenic to humans. While the appearance of toxic effects could be
considered “acceptable” in patients in view of therapeutic effects, the
Abstracts of Oral Presentations
131
onset of primary tumours in healthy subjects handling them during
working activities cannot be acceptable.
Aims: The study is aimed i) to present Environmental Monitoring (EM)
data for evaluating the occupational exposure to cyclophosphamide (CP),
ifosfamide (IF), 5-fluorouracil (5-FU), doxorubicin (Dox) and epyrubicin
(Epy) in different Oncological Departments (OD) of South Italy; ii) to
highlight possible causes of contamination, the crucial role of personnel
information/formation in order to improve working modalities.
Methods: EM was carried out in 7 OD of 6 different hospitals between
2004 and 2008. Information about working organization were collected by
administering a detailed questionnaire to personnel. More than 800 wipesamples were collected on different surfaces of the cytostatics
preparation rooms. Analytes were extracted with diatomaceous earths
(CP, IF, 5-FU) or SPE (Dox, Epy) and quantified by GC/MSMS (CP, IP) and
HPLC/UV (5-FU) or FL (Dox, Epy). Analytical methods were fully validated
according to Food and Drug Administration Guidelines. The measured
2
contamination levels were analysed (χ tests and Spearman correlation)
with respect to sampled surfaces and with respect to various amount of
analytes daily handled.
Results: The actual working practices differed from the guideline
statements in all OD. The measured analytes concentrations showed wide
2
range of values, 1000 higher than those reported in literature (µg/dm vs.
2
ng/dm ). Diffuse contamination throughout drug preparation rooms was
found, with workbenches as the most polluted sites. Analytes were
detected also when they were not handled.
Answers to questionnaires administered to nurses put in evidence grave
lacks in personnel formation: in most cases nurses employed in cytostatics
manipulation attended a formation course more than five years before,
while Italian Guidelines state that it must be performed annually, or they
were not formed at all. As a consequence, nurses appeared to be poorly
aware of the risks related to working activities – in some cases they didn’t
know about the carcinogenicity of some cytostatics. This can also be
considered the primary reason of the inadequate drugs manipulation, but
also of the incorrect drugs storage, usage of personal protective
equipment (when they were not used at all), surfaces and floor cleaning
procedures and waste disposal (as for contaminated gauzes and drug
flacons).
Conclusions: Data from environmental contamination levels and
information about working modalities suggest that the poor awareness of
the risks related to antiblastic drugs manipulation and
organizational/structural deficiencies can be considered the majors
“sources of contamination”. Performing personnel information/formation
courses and planning monitoring campaigns annually appeared to be
critical in order to improve working modalities and to adopt risk
management strategies to decrease the occupational exposure to
cytostatics.
that approved (by the majority) such a trial, without solid scientific
evidence of a causal relationship between CCSVI and MS and despite the
concerns about potential risks associated with the proposed therapy
(hemorrhage, dislodgment of blood clots resulting in heart attack or
stroke, nerve damage in the neck, among others).
The remaining sense of bitter of an approval arrived at the end of an
animated discussion amongst IRB members and prompted by the
considerable public pressure of MS sufferers, who rushed off to get the
surgery by many clinics offering liberation therapy, has raised a reflection
on how to prevent similar future cases, having the common denominator
of a physician/researcher putting himself out of the good clinical practice.
The way forward seems to promote a culture of research integrity, in
which misconduct is not tolerated.
ABOUT PATIENTS, “INVENTORS”, JOURNALISTS,
SCIENTISTS AND IRBs (TO SAY NOTHING OF THE
INSTITUTIONS): CCSVI AND MS
ETHICAL ISSUES IN THE TRANSPLANTATION OF UTERUS
Antonella Piga, Università degli Studi di Milano, Italy
[email protected]
The Stamina method, the stem-cell “therapy” used by the Italian
researcher Davide Vannoni, “a psychologist turned in medical
entrepreneur”, as the magazine "Nature" caustically called him, has
gained extensive media coverage in Italy and internationally this year.
Many Italians relived the nightmare of the supposedly effective treatment
for cancer, the Di Bella multi-therapy: like nowadays, in 1998, following
the growing public demand, the Italian Parliament passed an act
authorising that clinical trials could be conducted and making funds
available despite lack of scientific basis for the claims.
A similar, but even more complex story, showing the growing power of
social media, is that of a controversial new treatment for multiple
sclerosis (MS), proposed by another Italian physician, Dr. Paolo Zamboni,
a vascular surgeon who theorized a condition called “chronic
cerebrospinal venous insufficiency” (CCSVI) as playing a role in the
pathogenesis of MS and proposed a “liberation therapy” (unblocking the
extracranial venous obstruction using angioplasty).
The MS and CCSVI case is more complex because controlled multicentre
“liberation” trials have been allowed by many (not only in Italy) local IRBs,
i.e. the committees that have been formally designated to protect the
rights and welfare of the research subjects.
The Author analyzes her own experience as member of one of those IRBs
CHILD’S VACCINATION REFUSAL BY PARENTS:
AN EVENT CHANGING THE FACE OF THE POWER
Marie-Geneviève Pinsart, Belgian Advisory Committee on Bioethics; Free
University of Brussels, Belgium
Child’s mandatory vaccination is criticized, and even rejected by some
parents, physicians and organizations of different kinds. Refusal is a wellknown behaviour in medical practice, submitted to many different
analyses in bioethics, especially in the field of medical treatment. The
refusal we are talking about involves a child, but it is expressed by a
parent who is not personally concerned by the vaccination. For parents,
vaccination is a preventive measure against a disease that often has
disappeared in their country or that seems less important than other
more prevalent pathologies (especially in developing countries).
This talk aims to analyze how the refusal of child’s vaccination changes
the balance of power between the different protagonists involved. We
will especially focus on women in order to bring to light the particularity
of their contestation, their capability to change the balance of power. This
change of balance forces all protagonists (women/men, parents,
physicians, scientists, State, community, etc…) to reconsider what was
until now considered as evidence in their field of power: scientific
evidence (“the eradication of some diseases depend on the vaccination of
everyone”) or social evidence (everybody has the duty to protect the
others from contamination”).
Our analysis will be transversal (as we will use examples from different
continents) and prospective as it is very important to draw several lessons
from the motivations and the consequences of this child’s vaccination
refusal.
As vice-chairwoman of the Belgian Advisory Committee on Bioethics, I will
rely on the work in progress of the Commission dedicated to this topic.
F. Policino, P. Buccelli, V. Maietta, V. Graziano, International Office for
Bioethics Research of the European Center for Bioethics and Quality of Life
of the UNESCO Chair in Bioethics Unit - Ethics Committee “Carlo Romano”,
University of Naples Federico II, Italy
About 7 million women in the United States suffer from AUFI (complete
uterine infertility) because of congenital causes (absence or malformations
of the uterus), or acquired causes (e.g. following hysterectomy for
uncontrollable bleeding. For many of those women not experiencing
pregnancy and childbirth is a huge problem, and it is a problem which
undermines the quality of life of many couples. In those cases uterine
transplant was identified as the possible solution to such problems.
The first human transplant of uterus (UTn) dates back to 6th. April 2000
and was performed on a 26 year old woman who had been subjected to
hysterectomy because of a post-partum haemorrhage six years earlier.
The donor was a 46 year old woman with a polycystic ovary.
Since 2000 several scientific papers have been published about
successfully completed UTns on animal models (autogenic, syngeneic and
allogeneic).
Other transplants of uterus in humans are known to have been
performed; hence the need arises to identify valid criteria of realization,
in adherence to shared ethical principles (autonomy, beneficence, nonmaleficence and justice) and within their applications (informed consent,
assessment of risks and benefits, proper selection of patients).
The Authors as well as expressing similar considerations to those
expressed on other types of not life-saving transplants of organs and
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UNESCO Chair in Bioethics 9th World Conference
tissues (transplants of hands, abdominal walls, larynx and face), in cases
of transplants of uterus also share their considerations on the level of
experience reached by research, on the information for consent, on the
respect of the rights and the limits to the autonomy of the person.
They also envisage ethical parameters and criteria which, in their opinion,
it is of paramount importance to meet for any woman to be a candidate
for this type of transplant.
IMPLEMENTING DENTISTRY GUIDELINES IN CHILDREN:
PEDIATRIC DENTISTRY
Antonella Polimeni, University of Rome “La Sapienza”, Italy
[email protected]
Traumatic lesions of the oro-dento-facial district in children represent an
important public health problem. In fact, the increased prevalence of
dental trauma witnessed in the last twenty years prompted the
compilation of guidelines to summarize recommendations and evidencebased guidance on prevention and immediate management of dentoalveolar trauma in young patients, including a careful evaluation of
medico-legal implications.
A proper management of dental trauma in children and adolescents
requires a diagnostic and therapeutic path that follows a specific protocol,
as in young subjects the prognosis of traumatic dental injuries depends on
the time elapsed between the traumatic event and the beginning of
treatment.
The first aid following a dental trauma in children, defined as the set of
procedures that must be known and applied by health professionals in the
intra/extra-hospital environment, plays a role of primary importance
given the high prevalence with which dental trauma events occur in this
age group.
The dental trauma can affect the hard tissues of the tooth, the pulp and
the periodontal structures. As a result of a trauma involving the facial
district and the dental arches, the necessary therapeutic services can be
aimed at the restoration of the mucosa, at the immediate reconstruction
of the traumatized tooth, at the reattachment of the fractured coronal
fragment, and at the replanting of the uprooted tooth/teeth, whenever
possible.
Within primary prevention, both in infancy and in childhood, it is essential
to reduce the risk of traumatic injuries in patients with malocclusion
resulting from non-nutritive sucking habits, such as finger or thumb
sucking leading to an increased overjet. In such cases, an early specialist
visit finalized to an immediate orthodontic interception of any dental
protrusions is appropriate.
One of the primary preventive measures recommended in sports
environments involves the use of mouthguards as safety devices for
subjects with increased overjet.
BIOSCIENCE ETHICS EDUCATION: CHALLENGING
LEARNING ACROSS THE GENERATIONS WITH PARTICULAR
REFERENCE TO HUMAN REPRODUCTIVE BIOLOGY
Irina Pollard, Macquarie University, Australia; UNESCO School of Ethics;
Chair of the Australian Unit of the International Network of the UNESCO
Chair in Bioethics (Haifa)
[email protected]
Fundamental changes in society brought about by science and technology
have affected human relationships and practices in often unpredictable
ways. Maintenance of a healthy human society in harmony with the
environment has become increasingly demanding. In many instances
traditional/cultural ethical principles are no longer valid or even helpful in
our modern technologically-based world. Therefore, if society is to
establish a workable ethical consensus it must become willing to adjust
traditional teaching methods in order to accommodate new incoming
information. That is, if bioethical discussion is to be relevant to our lives,
there is a need for in-depth biological knowledge consistent with modern
scientific insights. To cope with change, new biocentric survival priorities
have to evolve alongside forward thinking, learning, and teaching
practices. We need to discover new ways of learning that support
adaptive thinking appropriate to the choices that may confront future
generations – including accurate access to scientific, medical, legal and
technological knowledge. Accordingly, the scientific community needs to
integrate more efficiently research-based knowledge with wide-ranging
ethics learning and problem solving skills. Bioscience-BioEthics
International (http://www.bioscience-bioethics.org/), an established
interface bridging applied science and applied bioethics, can assist in this
process of integration. This presentation describes the unit ‘Bioscience
Ethics & Reproduction’ (Bioscience Ethics by Irina Pollard. Cambridge
University Press, Cambridge, 2009) as taught at Macquarie University’s
Department of Biological Sciences. BIOL346 aims to provide students with
a better awareness of the socio-ethical implications of current scientific
and technological developments.
VIOLENCE ON “PRETTY WOMEN”:
SIMULATION OR HELP REQUEST?
Roberta Pollicino, Simona Bulgarelli, Rosa Maria Gaudio, University of
Ferrara, Italy
[email protected]
Violence against prostitutes is a very timely topic, especially for social
issues relate to it.
The missed consent to sexual performance, the attempt to escape from
mistreatment, the simulation of abuse aimed at the complaint of another
crime (theft, threat, etc), are just some of the reasons behind the
prostitute "denounce" of violence. What figures are involved and what is
the task of those who receive such a request? What is the role of the
medical doctor?
PUBLIC ROLE OF THE MEDICAL PROFESSION IN THE
CHANGING WORLD
Kristina Popova, Iva Miteva, Alexandrina Vodenitcharova,
Medical University of Sofia, Bulgaria
[email protected]
The paper examines the roles of physicians in public health, describes the
knowledge that they need to practice public health, and estimates the
specialized knowledge and skills needed to maintain an adequate public
health for the benefit of society as a whole. The acquisition of the
competence, compassion, and integrity is a primary goal for the training
in medical schools. However, evidence in our literature makes it quite
clear that our medical profession is unprepared to face the question of its
public role in the changing world. There is a need to reconceive the ideas
and roles of physicians through years of rapid changes in bioscience and
technology, social expectations of what medicine can do, complexity in
the provision of care, rises in the cost of services, and the increasing
burden of chronic illness.
Based on the review of the current literature we have developed a
questionnaire to invite students of medicine to complete it and share
views about their education to inform the development of new modules
and teaching materials that are relevant and responsive to student needs
and experiences. Students find it helpful to have a scholarly work on the
principal of professionalism, more concretely on the principles: integrity,
caring and respect, high standards and competency. These principles
influence both academic and professional success and there is a potential
to be developed as a rationale and strategy for the professions collective,
organizational, public roles. Students’ insights show that medical
education needs to be more dynamic, and better. The medical profession
may need a help to change in ways that will enhance medical
performance, confidence, creativity, and public trust.
WORKING TOWARDS A CULTURE OF COLLABORATION IN
MEDICAL SCHOOLS
Sashka Popova, Krassimira Markova, Emil Vodenitcharov, Kiril Pallaveev,
Medical University of Sofia, Bulgaria
[email protected]
Medical education needs to be more flexible and traditional universities
should take note that efforts are needed for a better balance between
cure-oriented and care-oriented medicine. Furthermore with increasing
workforce movement it is of great importance to assure that practical
skills and theoretical knowledge of a medical practitioner are independent
of the country where he or she has been trained.
Abstracts of Oral Presentations
The study reveals many advantages of the innovations aimed at ethics
knowledge acquisition and enhancement of students’ critical thinking
skills. Strategies encompass actions leading to empowerment of students
through engagement and participation in a range of activities for learning
to be sensitive to ethical dilemmas and enhancing ethical capacities for
decision-making as well as encouraging public debate on ethical issues.
Over the last decade the foreign student enrollment at the Medical
University of Sofia rose and their number per 100 medical students
jumped 35 percent, and per 100 students studying pharmacy – more than
50 percent. We carry out training modules with students on cross-cultural
communication. The implication of the training program has resulted in
much better mutual understanding. Evidence shows that the introduction
of a bioethics education using teaching materials produced by UNESCO is
a major step towards facilitating a culture of collaboration.
The Medical University has bilateral agreements with 31 universities in
Europe by Erasmus Program and our young researchers attend and share
practices in their doctoral research with colleagues from those
universities. During the period 2007-2012 in conformity with the
European mobility program over 160 students took courses of the
international training program in 12 countries of Europe.
Our experience shows that medical education is a key pillar in the building
of united human community and recognition of common values in the
diversity of cultures, and makes us hope that this approach will promote
medical professionalism.
COMPULSORY PSYCHIATRIC HOSPITALIZATION OF
MINORS – THE IMPOSSIBLE BOUNDARIES OF
AUTONOMY?
Dorit Porat, Beer Yaacov Mental Health Center, Israel
[email protected]
In order to hospitalize a person against his will in Israel, according to the
'mental health act', 1991, the person should be diagnosed as A) suffering
from a psychotic illness, B) being immediately dangerous to self or others,
and C) there has to be a connection between the two prior conditions.
Nevertheless, when adolescents are at the scope of the compulsory
hospitalization there is a different law, the 'youth' act, which is quite
different and states that in order to hospitalize a minor involuntarily for
the purpose of evaluation and diagnosis, the court should be convinced,
after reading the opinion of a district psychiatrist, based on the opinion of
a child and adolescent psychiatrist, that the minor is suffering from a
psychotic disorder or from another severe mental disorder which might
endanger the minor or others physically, or might lead to a severe
developmental damage. This definition is quite broad and is a subject to
different interpretations of the psychiatrist as well as the courts. In this
presentation, I shall present the ethical dilemmas stemming from these
various interpretations through a discussion of case in which a 16 years
old boy was hospitalized against his will under the 'youth' act, and a
decision had to be made as regarding the method of treatment. I shall
address as well some cultural perspectives through comparison to the
Italian law for the compulsory hospitalization of minors.
PLURALITIES OF IDENTITIES, GENDER ISSUES AND SEXUAL
ORIENTATION: BETWEEN BIOETHICS AND BIO-LAW.
AN INTERDISCIPLINARY REFLECTION
Alberto Postigliola, Naples University 'L'Orientale', Italy
[email protected]
The Study Group "Pluralities of Identities, Gender Issues and Sexual
Orientation: between Bioethics and Bio-law", in the Bioethics Research
University Centre, is composed by experts from different disciplinary
fields (philosophy, medicine, psychology, law, sociology, history) who
discuss about Gender Studies. The work of the group is a moment of
mutual confrontation for a joint reflection about individual, social and
cultural factors that can determine the well-being of the person and the
respect of his or her subjectivity. Recognizing these values means
respecting and protecting his or her rights and choice, highlighting the
plurality of the identities. The members of the group discuss, in an
interdisciplinary perspective, about many difficult issues about the
population LGBTQI (Lesbian, Gay, Bisexual, Transgender, Queer
Questioning and Intersexual) and the continuous and complex
comparison between the freedom of the individual person and the its
133
recognition in a social context. Some examples are: the wedding or the
adoption for gay or transgender couples, the surgery for sex change in
patients with Disorders of Sex Development, to "normalize" the
appearance of their genitals, the cultural conditioning and the gender
stigma, the sexual and gender discrimination in the sport.
ETHICAL ASPECTS IN TREATING DIABETES MELLITUS
Agung Pranoto, Dr Soetomo General Hospital; Airlangga University,
Indonesia
[email protected], [email protected]
The guidelines by The American Diabetes Association and the European
Association of Diabetes treatment are based on a patient-centered
approach.
Doctors should give information all treatment options, lists all commonly
used medications with all their properties (positive and negative), and
gives the patients a chance to make good choices based on priorities (ie,
avoiding hypoglycemia at all costs) and preferences. Treatment decisions
should be based on many factors include age, weight,
sex/racial/ethnic/genetic differences and comorbidities, such as coronary
artery disease, heart failure, chronic kidney disease, liver dysfunction and
hypoglycemia.
It is very often that a patient treatment decisions are not the best choices
because patients’ values, preferences, and expressed needs are very
often not supported from the ideal knowledge. Matters of coordination
and integration of care; information, communication, and education;
physical comfort; emotional support and alleviation of fear and anxiety;
involvement of friends and family; and transition and continuity of
treatment, equality in treatment facility among patients also affects the
management of disease, especially patients with many complications.
A case example: An ideal treatment choices is insulin treatment after oral
drug is failed, but it is very often the procedures is started in a very late
phase after many complications appear, many ethical aspects involved
will be discussed in this scientific meeting.
CAN ETHICAL EVALUATION BE AN ALTERNATIVE WAY OF
PREVENTING MEDICAL ERRORS?
Andreas A. Prokopiou, St. George's Medical School, University of Nicosia,
Cyprus
[email protected]
Well-publicised reports of harm occurring to patients as a result of their
medical care have raised public concerns about the safety of patients. In
this presentation, a case is reported where three doctors appear to be
insufficient in diagnosing a malignant condition in the parotid gland of the
patient. The late diagnosis and the treatments that followed resulted in
the death of the patient a year later. From a legal point of view, this case
can be considered as a medical malpractice; therefore negligence, which
was committed by medical professionals. However, additional to the legal
responsibilities, ethical responsibilities must be considered and discussed.
The author argues that the introduction of a new personal form of written
ethical evaluation has to be considered as an essential part of the notes
included in the patient’s file. Additionally, it is also advisable that the
Medical and Dental schools introduce new protocols of personal ethical
evaluations into their curriculum in an attempt to sensitise the doctor
while taking decision for their patients. It can be estimated that
"compulsory continuing ethical education" concerning moral issues may
improve the doctors’ character and it may change their decision-making.
Consequently, it can reduce the medical errors, which usually damage the
public trust in healthcare professionals.
In conclusion, the purpose of this paper is to offer an alternative way of
reducing medical errors by introducing a personal ethical evaluation form
for professionals in their practice.
INNOVATION, KNOWLEDGE AND FUTURE
Cristiano Radaelli, Italy
Future world is based on innovation and knowledge. Access, use, create
and publish digital media through computers, electronic devices and
communication networks are preconditions for growth and development.
Action to assure e-inclusion to all population is necessary and urgent.
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UNESCO Chair in Bioethics 9th World Conference
FACTORS INFLUENCING INFORMED CONSENT
IMPLEMENTATION IN HEALTH CARE SERVICE
IN INDONESIA
Ivan Rahmatullah, Sukmawati Basuki, Sajid Darmadipura, Beth E. Rivin,
Indonesia
[email protected]
In health care service setting, the term of informed consent implies that
physician and patient must agree upon the same understanding of the
preferred medical procedure prior to its execution. Lack of understanding
may lead to unexpected consequences, including an alleged malpractice.
Previous research showed that less than 20% of patients in health care
service understood about the core concepts of informed consent. One
potential intervention that could improve patient understanding in
informed consent is intervention to increase active patient participation
during informed consent. However, since studies on this area in Indonesia
is quite rare, a quantitative explorative study is needed to understand the
level of knowledge of the people about informed consent and the
behavior of active participation before designing the intervention.
Therefore, we conduct an ongoing research project aimed at
understanding the level of patient knowledge in informed consent, and
factors that might initiate active participation behavior guided by a health
behavior theory, Integrated Behavioral Model.
The study is currently still under ethical clearance process at Airlangga
University Institutional Review Board. Upon the completion of the ethical
clearance, the data collection would be started by recruiting and
interviewing respondents in four health care facilities in Surabaya,
Indonesia. The data collection accomplishment for this study is expected
in September 2013. Therefore, the dissemination of the study results
could be started in the late 2013. This study is funded by International
Biomedical Research Ethics Fellowship Grant.
BIO-ENHANCEMENT OR ULTIMATE HARM
Vojin Rakić, Head, Serbian Unit of the International Network of the
UNESCO Chair in Bioethics; University of Belgrade, Serbia
[email protected]
Eudaimonic agents have to become dominant in humanity if it is to
seriously diminish the probability of its self-annihilation. In order for this
to happen, humanity ought to be morally enhanced. It will be argued that
moral and cognitive enhancement have to be combined in such a way
that all cognitive bio-enhancement serves a moral goal.
It will also be demonstrated why the domination of the eudaimonic type
of agents can best be achieved in a liberal cosmopolitan order, and why
such an order is an increasingly realistic perspective in the time to come.
The self-annihilation of humanity, however, will also remain a likely
scenario. The probability of such a scenario can be diminished by biomedical means (neuro-pharmacological means in particular), i.e. by biotechnological interventions that have the moral enhancement of
humanity as their effect. Such an effect, however, cannot be expected in
the near future.
PERSONAL IDENTITY AND EXTENDED LIFE: BIOETHICAL
CONCERNS
Rosa Rantanen, University of Turku, Finland
[email protected]
In this paper, I examine the relation between the idea of a considerably
extended human life and personal identity. As the academic and public
interest in life extension has increased, it is important to consider how it
might affect the way we see personal identity. My starting point is a
debate between two philosophers, Walter Glannon and John Harris, who
disagree on the implications that a notably long lifespan would have on
our personal identity (This debate was published in Bioethics during
2002). I will examine these two lines of argumentation and evaluate their
meaning to the discussion on considerable lifespan extension.
Glannon argues that a life of 200 years would be so long that the mental
states of our future selves would be so weakly connected to the present
ones that we could not anymore say that our prudential concern can
extend to those future states. Harris suggests that a person might have
multiple sequential identities, and that even if personal identity fails over
time, there might still be “self-interested motivation for physical
longevity”. Glannon defends his argument by claiming that extending the
lifespan of the biological body does not equal extending the lifespan of a
person.
In my view, Glannon’s critique is not enough to show that Harris’
argumentation fails. However, Harris’ argument about personal identity
also needs further consideration. I suggest that we can be interested in
our distant future interests even if we would not be completely identical
to our future selves. This will affect the way we see the meaning of
personal identity in relation to ethical discussion on life extension, and
bioethics in general.
JEWISH PERSPECTIVES ON DISTRIBUTIVE JUSTICE AND
ECONOMIC CONSIDERATIONS IN MEDICAL CARE
Annie Reiss1, Yigal Shafran1,2,3, Esther-Lee Marcus1,4
Hebrew University-Hadassah Faculty of Medicine, Israel
2
Bar-Ilan University, Israel
3
Technion, Israel
4
Herzog Hospital, Israel
[email protected]
1
Halachah, the anthology of Jewish religious law, is a vast compilation of
directives and scholarly discourse ranging from biblical times to the
present day. Jewish bioethics is based on the biblical directive "Neither
shalt thou stand idly by the blood of thy neighbor" (Lev. 19:16). The ideal
of aiding all people in peril has always been challenged by limitations,
such as restricted financial resources. A millennia-long debate arose from
seeking optimal ways of fulfilling this creed in difficult situations. The
Halachah expresses diverse, and at times conflicting, views on the proper
allocation of limited financial resources. These views are relevant to
modern discussions of distributive justice in medical care, such as:
1. Financial limits to pro bono medical care: e.g. "Give to the poor man
according to what he lacks", as well as "One gives according to his
th
means" (Maimonides, 12 century, Spain).
2. Medical responsibilities towards foreigners: e.g. "Love ye therefore
the stranger" (Deut. 10:19), but also "The poor of thy city come first"
th
(Babylonian Talmud, 3-5 century).
3. Investing in 'quality of life' at the expense of life-saving care: e.g.
"Great is human dignity" (Babylonian Talmud, 3-5th century),
compared to "Obligatory and voluntary – obligation takes precedence"
th
(Rabbi David ibn Zimra, 15-16 century, Egypt).
The conflict between the ideal of benefiting all in need and the limitations
of financial means to do so is central to medical care today. The ethical
perspectives of Jewish scholars on this conflict may serve us in our quest
for contemporary solutions.
TRAINING THE MORAL MUSCLE: A COMPETENCIES BASED
APPROACH TO THE TEACHING AND EVALUATION OF
PROFESSIONAL ETHICS
Johannes Renders, Utrecht University, The Netherlands
[email protected]
To adequately assess the effectiveness of professional ethics education, I
propose a competencies based approach, building on a solid body of
psychological research (Rest and Narvaez, 1994; Rest et al, 1999; Callahan
and Bok, 1980) and integrating recent empirical developments in applied
ethics (Clarkeburn, 2002; Ritter, 2006; Rossouw, 2002; Hoven, 2010).
Discerning between various competencies such as moral sensitivity, moral
imagination, ethical reflection, makes it easier to determine which specific
skills are lacking and how the ethics program can be improved. These
competencies compose the moral muscle: The overall ability to identify
ethical issues and make well-justified ethical decisions. This metaphor
effectively conveys the idea that the ability of professionals to successfully
confront ethical dilemmas is something that can be trained, and that has
to be trained in order to successfully tackle ethical dilemmas. The muscle
metaphor and the competencies based approach are helpful tools for all
those involved in ethics teaching, providing a clear framework for the
design and evaluation of profession-specific ethics programs.
Abstracts of Oral Presentations
THERAPEUTIC OBSTINACY IN GERIATRICS
1
1,2
Franco Rengo , Giuseppe Rengo
1
Fondazione Salvatore Maugeri – Istituto Scientifico di Riabilitazione di
Telese Terme (IRCCS), Italy
2
Università di Napoli Federico II, Italy
Therapeutic Obstinacy has gained growing interest since the scientific
breakthroughs in Medicine in the late 20th century have led to lower
mortality rates and longer life expectancy in developed countries. As a
matter of fact, a better understanding of the physiological and
pathological mechanisms of vital organs (central and peripheral nervous
system, cardiovascular, renal, endocrine-metabolic system, etc.), an indepth knowledge of the etiopathogenesis of the main organ diseases, the
dramatic development of imaging diagnostic techniques and the
availability of important evidence-based therapeutic principles have
resulted in the major development of Emergency Medicine (cardiorespiratory and renal instrumental support, control of hemostatic
balance, of nutritional balance, of hydro-electrolytic and acid-base
balance, dialysis and ultrafiltration, pharmacological coma, interventional
medicine, endoscopic surgery, radiation therapy, etc.) without forgetting
the role on Medicine and Surgery in chronic diseases.
Thanks to these breakthroughs the system of care has improved so much
the prognosis of hospitalized elderly patients, also in case of emergencies,
that the public opinion believes in the “immortality of hospitalization”,
which caused the booming of malpractice lawsuits, the birth of
“Defensive Medicine” and the spreading of Therapeutic Obstinacy.
The demographic revolution taking place in industrial countries in the
th
second half of the 20 century, which led to the aging of the population,
brought about a an epidemiological revolution with an strong increase in
all chronic and degenerative diseases in the elderly, with a highprevalence and high-incidence impairment of the functional state, of selfsufficiency and the need for long-term treatments. A new clinicalepidemiological typology has developed in Medicine, characterized by
advanced age, vulnerable organs, comorbidities, disabilities, high
iatrogenic risk and difficult socio-environmental situations, which in its
extreme form defines the so-called “fragile elderly” and whose main
feature is high complexity, severity and clinical instability, thus requiring
multiple hospitalizations. Hospital files show that people over 65 are
those who most frequently require hospitalization (50% of
hospitalizations) with a marked increase among people over 75.Over the
past 50 years, the number of admissions to geriatrics units for reasons
other than medical issues (social and economic causes) has diminished
and the number of admissions for medical causes has increased, mainly
for relapses and emergencies.
Nowadays in Internal Medicine and Geriatrics, the era of “Ageism” is over.
It is no longer the time when the elderly were excluded from hospital
treatments, since death at a certain age was considered unavoidable.
Now therapeutic obstinacy is replacing good clinical practice also in
geriatrics.
Unfortunately Therapeutic Obstinacy, cannot be defined in absolute
terms and can only be recognized by a careful analysis of every single
clinical case, considering the patients’ age and life expectancy,
pathologies, functional state, quality of life, family socio-economic
conditions, the care settings where they are admitted and the diagnostictherapeutic procedures executed.
Of course elderly patients cannot be denied admission to Emergency
Services, ICUs and Resuscitation units in case of an acute episode that can
be treated (stroke, acute coronary events, acute infections, fractures,
etc.)but we should avoid this becomes Therapeutic Obstinacy by resorting
to useless and ineffective diagnostic and therapeutic procedures. It must
be underlined there is not a consensus yet, apart from QoL issues, on how
long should procedures that might turn into TO be, such as artificial
nutrition or parenteral hydration, dialysis or ultrafiltration, assisted
ventilation, which, if stopped, not in case of death, could be considered as
passive euthanasia In this framework, a serious and frequent problem is a
geriatric patient who is unconscious and with no legal representative in
case of family conflicts
In conclusion, since there is no absolute criterion to define Therapeutic
Obstinacy, I believe the following aspects must be considered in order to
avoid it or, at least, reduce it:
1. Continuous update of doctors about innovations in diagnosis and
therapy, life-saving procedures and evidence-based medicine.
2. In-depth clinical evaluation of elderly patients, avoiding the
procedures that are not evidence-based.
3. Strengthening the doctor/patient-family relationship.
135
4. Thorough and continuous information to patients and family by
doctors about diagnostic and therapeutic decisions, avoiding to make
decisions without their consent, since informed consent is mandatory
by the law.
5. Avoiding to fall in TO by a careful global assessment of the patient,
and avoiding passive euthanasia, since there is no ad hoc legislation on
this issue at the moment.
BIOETHICS AND PEDIATRIC PALLIATIVE CARE:
THE SPEECH THERAPIST CONTRIBUTION
Alessandra Renzi, FLI Marche, Italy
[email protected], [email protected]
In the last few years, progress in the sphere of medicine and technology
reduced the rates of infant mortality and, at the same time, improved the
rates of survival in children with serious and potentially lethal pathologies
requiring complex palliative care. In children, there is no clear distinction
between curative invention to extend and improve the quality of life and
a merely palliative intervention. Both approaches coexist and prevail
depending on the different phases and situations.
Unfortunately, still in many cases, the risk is to pay attention only on the
disease, forgetting the patient and his or her family, which inevitably
suffers.
Pharmaceutical and recuperative therapies are not enough!
The C.P.P. are not in competition with or on alternative to normal
treatments. They must begin at the moment of the diagnosis and they can
be combined with a curative treatment or interventions for the extension
of life, they are fundamental to improving the quality of life, to guarantee
dignity to the patient and his family up to including mortality and grieving.
National Law 38/2010 about C.P.P. and Pain Therapy guarantees to the
incurable child right to access to this treatment through the provision of a
specific network services (hospital care, home care) that require
specifically trained professional figures and teamwork designed to
completely support the child and the family.
In this complex work, the speech therapist also takes part and with his or
her professionalism evaluates and assumes the treatment of the patient
exhibiting serious problems with language, communication, swallowing
often associated with these pathologies (absence of language, dysphagia,
dysarthria, etc…) in order to prevent more serious consequences as, for
example, ingestis, etc.
HUNGER STRIKES AND OTHER FORMS OF PROTEST
FASTING: MEDICAL DILEMMAS, MANIPULATION AND
MEDICALIZATION
Hernán Reyes, University of California, Berkeley, USA
[email protected]
Hunger strikes have been on and off the medical and media radar since
Ghandi used this form of protest quite effectively against the British
Empire in the mid XXth century. In the past ten years, it is the forcefeeding of fasting internees, held in Guantánamo Bay, that has put this
medical and ethical issue squarely on the front page so to say, notably
leading to heated confrontations between judiciary and medical
authorities in different contexts around the world. The question of how
best to respond to a hunger strike has become more and more complex.
The specific role of physicians has, at Guantánamo Bay and elsewhere,
been distorted, as physicians have been following military orders instead
of respecting principles of medical ethics.
Different types of fasting are used to protest in custody situations, all of
them categorized as “hunger strikes” by prisoners, authorities, and by the
today ever-present media alike. Health professionals entrusted with the
care of such hunger strikers also use this generic term which encompasses
very different situations. These different types of fasting are reviewed and
the proper management for each defined. A clinical framework necessary
for the benefit of health personnel involved is established. Finally, it is
shown that what is most important after determining whether there is
need for the physician to intervene, is to avoid getting tied up in what can
be called the “Endgame” – focusing exclusively on avoiding fatal
outcomes. Serious hunger strikes with realistically possible fatal outcomes
are in fact quite rare. True hunger strikers are not suicidal; in fact they
usually protest wanting to “live better”. Most important, physicians need
to know that there is time for discussions and even possible mediation.
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UNESCO Chair in Bioethics 9th World Conference
What should be avoided is hunger strikers painting themselves into a
corner making any practical solution impossible. Lawyers, judges, and
physicians need to avoid getting themselves into inextricable imbroglios
that are counter-productive for all. Physicians need to learn how they can
defuse difficult situations, and gain, or re-gain, and maintain the trust of
Hunger strikers who are their patients. In the very rare cases where
fasting truly could be pursued to the final limits, physicians are bound to
follow the ethical guidance provided and documented by the World
Medical Association. In all cases, they should try to make the best use of
the time they effectively have to dialogue with the hunger strikers, strive
to find a solution acceptable to all, and not be distracted by theoretical or
political issues. They should avoid over-medicalizing their necessary
supervision, as this may contribute as well to the “painting” into
inextricable corners. Finally, physicians should be aware that some hunger
strikers may be merely manipulators who will try to deceive everyone
concerned as to their real intent, but who have no intention of harming
themselves – indeed, they count on medical staff taking care of them.
These are the many keys to the proper and ethical management of
hunger strikes.
MEDICAL ETHICS: A GUARANTEE OF IMPARTIALITY
VERSUS CONFLICT OF INTEREST
C. Ricci, I. Aquila, S. Boca, M. Chiarelli, D. De Bartolo, S. Gratteri, C. Pileggi,
A. Serra, P. Ricci, University “Magna Graecia” of Catanzaro, Italy
[email protected]
Introduction: Many biomedical researchers have financial dealings with
pharmaceutical companies that expect to benefit from their professional
activity and, in particular, from their studies. This kind of relationships
generates the serious risk of opacity and conflicts of interest and,
therefore, possible negative effects both on the objectivity of scientific
research and on healthcare.
Objective: The objective of this study is to identify, mainly from the
scientific point of view, the visibility in the scientific literature of the
pharmaceutical conflict of interest.
Materials and Methods: A review of the national and international
biomedical literature on pharmaceutical conflict of interest was done. The
literature search was done by using PubMed NCBI. The keywords used
were “conflict interest pharmaceutical” and “conflict interest disclosure”;
the search was restricted to the last 5 years’ publications relating to the
human species that was possible to get for free.
Results: 2,426 abstracts were highlighted by the generic search, 139
articles satisfied the requirements and only 94 items had the conflict of
interest as a specific argument. However, the review of the scientific
literature has highlighted a growing sensitivity to the matter in hand;
similar trend is also visible in the international and national legislation. In
Italy the Decree 8 February 2013 (“Criteria for the composition and
functioning of ethics committees”) specifically rules the healthcare
activities with ethical, scientific and methodological evaluations about
clinical trials.
Conclusions: Due to the gravity of the problem, we would expect a higher
visibility in order to stimulate the development of strategies to contrast
this phenomenon. However, the main way to reduce the pharmaceutical
conflict of interest is the medical ethics.
CURRENT SITUATION OF MEDICALLY ASSISTED
REPRODUCTION IN ITALY AND JURISPRUDENCE OF THE
EUROPEAN COURT OF HUMAN RIGHTS
G. Ricci1, P. Delbon2, A. Conti2
1
Università degli Studi di Camerino, Italy
2
Università degli Studi di Brescia, Italy
[email protected]
This work analyzes current situation of medically assisted reproduction in
Italy after the promulgation of Law 40/04. After analysis of the legislation,
the views of various authors are compared, and the weaknesses and
strong points of the law are considered from the point of view of legal
medicine and bioethics.
The controversial points to be addressed are the exclusion of recourse to
medically assisted reproduction for couples who bear genetic diseases,
the prohibition of heterologous fertilization and of cryo-conservation of
the embryos, the obligation to perform just one, contemporaneous
implant of all the embryos produced, and the limitations posed on
scientific research.
The work also comments recent case law of the European Court of Human
Rights and questions of constitutionality raised by some Italian Courts.
ETHICAL AND CLINICAL IMPLICATIONS OF INTERRUPTING
ACETYLCHOLINESTERASE INHIBITOR TREATMENT IN
SEVERE ALZHEIMER’S
1
2
2
Raffaella Rinaldi , Antonio Carolei , Patrizia Sucapane ,
2
2
Simonetta Mearelli , Elio Nardecchia
1
“Sapienza” University of Rome, Italy
2
University of L’Aquila, Italy
[email protected]
Alzheimer’s Disease (AD) is the most common form of dementia among
western population. The cognitive and functional decay characterizing the
disease causes a progressive loss of autonomy in activities of daily living
which, at severe stages, leads the patients to become completely
dependent on caregivers and finally results in a great social burden. The
direct and indirect costs related to AD, including both the economic and
the human aspects, make the management of this disease an absolute
priority in health care planning.
In particular, high priority should be placed on preserving the patient’s
autonomy as long as possible by slowing down the progression of the
disease.
At the time being, the best results in modifying the natural history of the
disease have been achieved by treating the patients with
acetylcholinesterase inhibitors (AchEI). Various studies have shown the
effectiveness of AchEI in temporarily improving the cognitive and
functional performances in patients with mild to moderate Alzheimer’s. In
Italy, in accordance with Note 85, 2007 (modified in 2009) from the Italian
Medicines Agency (AIFA), AchEI can only be prescribed to those patients
who fulfill strict criteria and the treatment must be interrupted whenever
the patient reaches an MMSE score of 10.
By comparing through scales, such as SIB, ADCS-ADL, CIBIC and CIRS, the
status of a group of patients with severe AD and their caregivers before
and one month after interruption of AchEI treatment, our aim is to point
out the consequences affecting the patients, the caregivers and the
physicians as well as to call in to question the methodological and ethical
correctness of basing a life-changing clinical decision solely upon strict
criteria.
ISLAMIC MEDICAL ETHICS: THE EMPLOYMENT OF
ADVANCED TECHNOLOGIES IN GENDER ISSUES
Vardit Rispler-Chaim, University of Haifa, Israel
[email protected]
Islamic medical ethics is a field of research that has developed immensely
since the 1980s, based mainly on fatwas (juristic legal opinions). Until the
early 1990s fatwas were issued by leading religious scholars and printed in
daily newspapers and periodicals. Recently the media and the internet
have been widely recruited to publicize the latest fatwas.
Attitudes to science in Islamic medical ethics, as described by RisplerChaim (2002, 2006), have generally been favorable. The recurrent
explanation for this is that God is He who enables humankind to
understand the secrets of creation and the human body, and then to
employ the fruits of advanced technology in diagnosis, treatment and
cure of one's body. Some exceptions to this wide acceptance do exist, as
will be set forth in my paper.
Through three topics connected to gender, namely the pre-selection of
the gender of the fetus, the re-attachment of a torn hymen, and sexchange operations, which require a high level of technological
sophistication, attitudes to advanced technology are examined. As will be
shown, gender issues, even when they have a medical aspect, are not
detached from socio-religious constraints. Consequently, when new
scientific and technological innovations are considered for application to
gender-related medical procedures, the positions taken by religious
scholars are not always supportive; social norms permeate the scientific
discussions, among supporters and opponents alike. The formula that is
eventually understood to represent the ethical norm on any given
dilemma, including gender-related, is rarely unanimous or final, and can
therefore be reopened or contested at any time.
Abstracts of Oral Presentations
A DISABILITY BIOETHICS CURRICULUM THAT
ENCOURAGES REFLECTION AND OPEN DISCUSSION
AMONG STUDENTS AND COMMUNITY MEMBERS
Julie Rogers, Rachel Havyer, Dominic Caruso, C. Christopher Hook,
Mayo Clinic College of Medicine, USA
[email protected], [email protected],
[email protected], [email protected]
Over one billion people live with a disability and experience significant
health care disparities compared to non-disabled peers, according to the
UN World Report on Disability. There are several ethical questions that
need to be asked to address this problem (e.g. the role of medicine in
balancing tolerance of human diversity, addressing social contributions to
disability and treating or preventing disability), but medical education
traditionally does not discuss these topics. We developed a unique preclinical curriculum that includes sessions facilitated by both community
members that have disabilities and medical school faculty, and covered
bias, disparities, and medical and social models of disability. A two-part
bioethics discussion concluded the curriculum. After an open discussion
about the intersection of medicine, society and Down syndrome, students
were asked to contemplate the topic overnight and respond anonymously
via an electronic survey. The electronic responses illustrated a wide range
of student opinions, which informed a second discussion about how we
believe our worldviews should influence our practice and interactions
with our colleagues. At the conclusion of the curriculum, seventy-two
percent of students thought that classes that included individuals that
have disabilities significantly shaped their ethical opinions, and sixty-three
percent of students thought that other classroom sessions significantly
shaped their ethical opinions. One hundred percent of students thought
that it was important to learn about disability ethics in medical school. In
conclusion, we developed a disability bioethics curriculum that provided
context through community involvement, allowed for reflection and open
discussion and was valued by students.
ETHICAL COMMITTEES ROLE IN THE DEFINITION OF
PRIORITY LEVELS OF CARE PATHWAYS:
OFF LABEL DRUGS USE
M.R. Romano, G. Russo, M. D'Amora, ASL Napoli 3 Sud, Italy
[email protected]
Medical doctors have the duty to promote and protect the health of
participants in clinical research, as promulgated in the Helsinki
Declaration.
Health promotion is an ethical principle to protect the rights of the
citizens.
It needs to be considered as a set of strategies aimed at improving life
conditions.
Ethical choices are fundamental in the definition of the governing aspects
and of the guidelines for the respect of human rights and equality.
This is even more important in the case of rare diseases. A crucial element
between the treatment of rare diseases and the protection of patients
health is represented by off-label drugs, which in our health Agency is
subject to the review of the Ethical Committee. This Body should not be
considered as a bureaucratic obstacle, but an instrument to guarantee the
patients’ health protection, through an in depth analysis of the proposed
therapy and of the reasons supporting it, based on the presentation of
the available therapeutic alternatives and of the current evidence.
The activity path can be summarised in a Swot Analysis:
Strengths
Centralization, verification, systematic monitoring of the procedures
Weaknesses
Bureaucratization, limited responsibility of the requesting organization
Opportunities
Creation of a multidisciplinary group, increasing communication, financial
reporting
Threats
Slowing of the availability process, external causes, internal interferences
The aim of the strategic planning is to conduct procedural planning,
conduct and reporting of the indicators of outputs and outcomes, which
allows for the creation of an organizational and management model for
the Agency activities with a high technical and scientific profile and a high
health ethics component. This has an impact on the economic component
137
of the drug prescription and selling, which is based on the ethical
scientific analysis.
CLINICAL STUDY WITH MEDICAL DEVICE IN THE LECCE ASL
R. I. Romano, M. Canitano, C. Morciano, ASL Lecce, Italy
[email protected]
Introduction: The development of Medical Device (MD) evermore
technically advanced and complex, helps to improve the diagnostic and
therapeutic approach in medical fields. In Italy according to the DL
25/01/2010 n.37, the clinical evaluation is extended to all the MD and the
focus is not only on the safety aspects but also on efficiency and
risk/cost/benefit ratio. In Italy, the appointed authority for this type of
statistic analysis is the Ministry of Health to whom all the pre marketing
study results are given. In addition, it is mandatory to consult with the
appointed Ethical Committee (EC) to ask their opinion regarding pre and
post marketing clinical and observational studies. The absence of a
national database in Italy has emphasised the need to compile one to
highlight local epidemiology.
Materials and Methods: The Scientific Secretary (SS) of Lecce ASL CE
receives the documentation from the aforementioned studies then
analyses it and then looks into it in more detail. The SS then compiles an
individual case profile which is required for the approval from the EC.
Once the study has been authorised, it is recorded in a purpose-built excel
database (created in February 2008) containing fields such as: Hospital,
Wards, Requesting Doctor, MD, Request Details and date of approval.
Results: The analysis of the inserted data has highlighted the fact from
01/01/2008 to 01/02/2013 17 studies with MD have been submitted to this
EC (of which 65% are clinical): of these 56% relates to MD used in
cardiology, 13% in otolaringoiatry and emodynamics, 6% in pediatry,
thoracic surgery and neurosurgery.
Conclusions: The data shows a higher inclination in MD experimentation
in the field of cardiology however, the absence of a national database
which reflects in an absence of available public data relating to these
studies, doesn't allow a real monitoring from the appointed bodies on this
kind of experimentation. This CE hopes therefore that all legal means will
work together in order to allow an exchange of information between
everyone involved to encourage, for these studies as well, the search for
better quality.
MENTAL DISORDER AND INCAPACITY TO MAKE
HEALTHCARE DECISIONS
Claire Rommelaere, Albert Fox, Université de Namur, Belgium
[email protected], [email protected]
Suffering from a mental disorder does not necessarily lead to incapacity
or incompetence to make healthcare decisions. Following the World
Health Association’s distinction, “capacity refers specifically to the
presence of mental abilities to make decisions or to engage in a course of
action while competence refers to the legal consequences of not having
the mental capacity” (WHO, “Resource Book on Mental Health, Human
Rights and Legislation”, 2005, p. 39, www.who.int).Taking this clarification
into account, we wish to present three questions related to incapacity to
make healthcare decisions due to a mental disorder: who assesses
incapacity? How is this assessment realized, do some guidelines exist?
What are the consequences of a decision about incapacity?
We will analyze the choices made – or not – by the Belgian Legislator in
the light of bioethics principles such as “autonomy”, “beneficience” and
“nonmaleficience” (principles developed by T. Beauchamp and J. Childress
in Principles of biomedical ethics, 5th ed., New York City, Oxford
University Press, 2001).
To offer the public a description of the issues as rich and subtle as
possible, we thought appropriate to combine the analyze of a PHD
student in Law and Healthcare Ethics, Claire Rommelaere, and the one of
a specialist physician with an extensive experience of medical ethics, Dr
Albert Fox, both members of the Centre for Law, Ethics and Health
Sciences of the University of Namur (Belgium). Therefore, the legal and
ethical analyze will be illustrated by concrete situations drawn from
hospital practice.
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UNESCO Chair in Bioethics 9th World Conference
THE RELIABILITY OF THE CHILD'S TESTIMONY:
FORENSIC-PSYCHIATRIC ISSUES AND
ETHICAL-DEONTOLOGICAL IMPLICATIONS
1
1
Gaspare Ronchi , Francesco De Micco , Antonello Crisci
Second University of Naples, Italy
2
University of Salerno, Italy
[email protected]
2
1
Until a few years ago experts believed that the value of the child's
testimony was not very relevant. In recent years, however, the forensic
psychological and psychiatric literature started to show that the child,
even at a very young age, could be a reliable witness. This ability to testify
must be carefully assessed by the expert, or, preferably, by a Board of
Experts, with special skills in the specific field. The experts, starting from
the provisions of the "Carta di Noto" (2002) and the subsequent
"Protocollo di Venezia" (2007), should always keep in mind the most
recent scientific evidence in the field of developmental age. These studies
clearly show that the degree of language comprehension is lower as the
child is younger. The child under four years of age may not have the
necessary language skills: the child between four and six years provides
very few reliable answers, with understanding capacity reduced from 40%
to 65% (poor understanding of the meaning of negative, passive or
subordinate sentences, and the possibility of random answers (memories
manipulated internally and externally). In the present paper, the authors
propose to analyze the main critical issues in the methodology of forensic
investigation, in relation to a proper assessment of the reliability of the
child’s testimony, especially in the age range around 4 years. The Authors
consider that the proper approach, evidence-based, has important
implications in the field of Ethics and Conduct. In fact an incomplete
evaluation conducted by untrained personnel can have a serious impact
on the assessment of the truth of the case. It can also greatly affect the
dynamics of existence of the child, his family and those who find
themselves involved in various ways. The authors conclude emphasizing
that this is a very complex research field and should be entrusted to
qualified and experienced personnel, preferably a Board of Experts in
order to take advantage of the various professional skills.
CONSENT OF MINORS: CLINICAL POINT OF VIEW
Roberto Rosset, OMCeO AOSTA, President, Italy
[email protected]
The first manifestation of a patient's right to information resides in the
pamphlet of 1794 by Thomas Percival in contrast with "deception
charitable" It is not, however, been a long time since it has spread to Italy
the belief that medical treatment cannot be carried out without the
informed consent of the patient. Our country is not an isolated
phenomenon in the Western world, but here it was, in our opinion, more
than elsewhere, protagonist “the right to health” and the strong
connection that correlates to the body and freedom of the person. It's
was born the issue of informed consent with regard to patients
considered unable to act (temporarily or permanently patients without
conscience and minor patients) and, therefore, deemed able to consent.
Furthermore, there were at least three other intertwined historical
processes that I see, on the one hand, the decline of paternal authority
and medical paternalism, and on the other, the emergence of the
subjectivity of the child rights and the recognition of its own: in the
background the increasing importance of fundamental rights.
With the use of the institution of legal representation the legal
representative is authorized to give consent in the place and stead of the
incompetent but more and more this solution was inadequate. The "selfdetermination of the minor capable of discernment" is currently looking
for any recognition. At present, this determination is to be understood
especially in a weak sense, that is geared more to the right of resistance
to medical treatment, rather than as exclusive ownership of the right to
consent or not.
Starting from the elements in the field, namely the minor, the parent
(guardian) and the medical subject all goal-oriented at the health but
through choices potentially conflicting I examine some contexts in which
the usual model could present critical. For example, clinical testing,
contraception, drug addiction, the voluntary interruption of pregnancy,
transplants and transfusions are just a few examples of areas in which the
“self-determination of the minor capable of discernment” may emerge
strongly regardless of the parent. I examine some recent court cases and
attempt, through the reading of the constraints and legal guidelines, a
reflection that provides the clinician behavior profiles consistent and
reliable.
RECOMMENDATIONS FOR SPEECH AND LANGUAGE
THERAPY IN THE JUVENILE JUSTICE
Tiziana Rossetto, Federazione Logopedisti Italiani, Italy
[email protected]
The evidence worldwide established let us recommend that every youth
offending team should have at least one full time speech and language
therapist who would also provide a service to the community. Speech and
language therapy provision could be in units for children excluded from
school, probation, mental health and drug misuse services. The UK is
currently the only EU state known to have any structured SLT provision
already in place for young people at risk of re-offending, although this is
not widespread as there are real barriers to its provision. Barriers include:
SLCNs not being identified and young people being labeled as simply lazy
or out of control; SLCNs being identified and treated as behavioural
difficulties; lack of understanding of the impacts of SLCNs; and limitations
on funding. Despite these barriers there is growing international
recognition of the value in introducing and extending speech and
language therapy services.
THE MEDICAL-LEGAL LIABILITY IN SOCIAL SECURITY
SYSTEM EVALUATION PROCESS: HOW TO HOMOGENIZE,
TECHNICALITY, TRAINING, ETHICS AND HEALTH LAW
Patrizio Rossi, INAIL (National Institute for Insurance against Accidents at
Work), Italy
[email protected]
In recent times, the issue of medical professional liability insurance
involved, more and more, even the legal medicine, particularly in the
security social health system.
In coincidence with the increased attention of injured or sick people
and/or security social health institutions to the medical-legal damage
evaluation, many hypothesis of error in the estimation of disability have
been highlighted.
These hypotheses can be mainly traced to incorrect references to tables
or incorrect application of the criteria. This is because in security social
health system guides and criteria are established by law, and many of
them are mandatory. In other fields (for example Private Insurance) the
lack of references established by law leave broader space to the
discretion of the evaluator. Error could also occur during the clinical
assessment (medical examination) and the interpretation of tests and
exams.
The legislature has provided by law the opportunity to correct such
errors, through so-called “error adjustment”. “Error adjustment” was
contemplated, at least literally, since Royal Decree n. 51 of 1904, formally
introduced into Italian law by the fifth paragraph of art. 55 of Law no. 88
of 1989 and most recently confirmed by art. 9 of Legislative Decree No.
38/2000: «The performance in any capacity provided by the insurer
Institute may be adjusted by the same Institute in case of error of any
nature committed during the lending assignment, supply or
reassessment». It should be noted, however, that the correction is only
possible within ten years from the date of notification of the original
wrong decision; correction is possible only if the error is proved by
criteria, methods and research tools available at the time of the original
decision.
However, modern management, ethics and effective healthcare error in
the evaluation of social security health system, cannot be guaranteed only
by the correction procedures provided by law.
Instead, multiple activities must be taken out, such as to ensure in
practice the principles of efficiency and appropriateness. These assets are
necessarily based on the principles of science and experience, evidence
and training.
Quality Indicators are significant n this process. Most sensitive of them
can be identified in the: national homogenization of the assessments;
correspondence between the stated percentage and the disability
ascertained; constant use of customization of the damage, allowed by
law. Useful markers of good practice are the substantial share of the
result and the reduction of litigation, too.
Abstracts of Oral Presentations
All this would allow the security social insurance system to meet the
demands of justice and equity, in harmony with all stakeholders, including
those bearers of future and/or potential interest. On the other hand, in
the more general view of Corporate Social Performance, nature and
evaluation of the social security health system function cannot be
influenced by the relationships between establishment and stakeholders.
MEETING THE CHALLENGE OF FUTURE EDUCATIONAL
SCENARIOS
Marco Rossi Doria, Italian University and Research Ministry (MIUR)
Information and Communication Technologies play an essential role in
supporting educational processes in today's digital society. The aim of this
contribution is to outline and reflect upon policies and actions that
maximize the benefit of the Digital Revolution for all. Enhancing digital
literacy, skills and e-inclusion, is among the prominent policy actions set
by the Digital Agenda for Europe; how to improve standards in schools
and set future educational scenarios is thus the challenge to overcome.
Implicit in the plan is the building of 21st century competencies through
collaboration, communication and critical thinking.
HOW DO YOU KNOW WHEN IT’S TORTURE?
Barry Roth, Harvard Medical School, USA
Copyright 2013
[email protected]
The forensic psychiatric expert’s assessment of torture survivors who
manifest Post Traumatic Stress Disorder and apply for refugee asylum is a
paradigmatic example of the interface of psychiatry and the law. While
acknowledging the utility of current dominant and well-established
protocols, it is also imperative to note and correct shortcomings. This
paper illustrates a reproducible and easily communicated heuristic model
which simultaneously comprehends and designates the negative
dimensions of the humanitarian catastrophe of torture, respects clinical
variables, and reports the interactivity of individual psychological factors
with the cultural/political nexus. One case drawn from two decades of
evaluations of torture demonstrates this innovative update of
mainstream medical-scientific practice. A consistent pattern emerged
from review of country reports, survivors’ affidavits, interviews, reports
and testimonies to the court. Ordinary means led to extraordinary
findings that were needed to incorporate and supersede the previous
paradigms that have defined torture and designated capacities of
psychological response. Torture is the crime of the specific intent to
shatter the human bonds which sustained survivors. Torture tools could
not break these non-material human ties – which had created society and
nurtured survivors before torture, sustained them during torture and its
report; and will have grounded healing. Forensic examination of torture
survivors’ PTSD also reveals that torture and terrorism are synonymous in
bio-psychosocial and ethical dimensions. The Istanbul Protocol definition
of torture specifies official intent of “intimidating or coercing.” Terror is
often defined as “the state of intense fear” or the “ability to instill
intense, overpowering fear… especially against civilians.” And terrorism is
defined as the systematic use of terror, especially as a means of
coercion.” To survive the PTSD associated with torture, like terrorism,
survivors used the force of human ties as an effective tool. Human ties of
sane civil society oppose, resist and supersede the violent intimidation
and coercion of torture and terrorism alike.
MAXIMUM RISK STANDARD IN BIOMEDICAL RESEARCH
Joanna Rozynska, Chair, Polish Unit, International Network of the UNESCO
Chair in Bioethics; University of Warsaw, Poland
[email protected]
Assessment of risks and potential benefits is essential for determining
whether the research project is ethically and legally acceptable. All
international and European regulations stipulate that risks of the research
should be proportionate to its potential benefits. Where the research has
no potential to produce results of direct benefit for the subjects,
proportionality requirement is strengthened by additional preconditions
setting a more stringent threshold of admissible risk. There is a regulatory
consensus that in case of “non-therapeutic” research involving persons
139
unable to give consent, the risks involved should not exceed a certain
minimal threshold. However, there is no agreement on the admissible
level of risks which a competent, fully informed and willing subject may
be exposed to. The aim of this presentation is to analyze this problems in
the context of the Council of Europe Oviedo Convention and its Additional
Protocols.
The Additional Protocol concerning Biomedical Research states that “nontherapeutic” research may only be undertaken if the research entails no
more than acceptable risk (Art. 6 sec. 2). Section 27 of the Explanatory
Report clarifies that whether or not the risks are acceptable should be
assessed by the research ethics committee and by the potential research
subject. While the right of a competent individual to make a subjective
judgment on the risk acceptability is uncontroversial, it seems difficult to
determine what objective (or inter subjective) criteria the REC should
apply. I will argue that risks of “non-therapeutic research” are objectively
acceptable if: (1) they are justified by the scientific and social value of the
potential research results; (2) they are necessary, meaning there is no
alternative method of comparable effectiveness and more favorable riskbenefit ratio; (3) they are proportionate to the potential benefits; (4) they
are minimized; (5) they do not involve risk of violating subject’s dignity,
identity or other fundamental and inalienable rights; and (6) they do not
exceed socially acceptable level of risks an individual may consent to
carry for the sake of others.
I will show that the conditions 1-5 are prescribed expessis verbis by the
Oviedo Convention and the Additional Protocol. I will argue that the
correct interpretation of the condition 6 must take into account that: (i)
participation in research is not a moral duty but a supererogatory act; (ii)
in case of “non-therapeutic” research, it is done for the sake of strangers
(future patients) or impersonal values (development of generalizable
knowledge); and (iii) it has noncommercial character, meaning the
consent for participation in research should not be motivated by prospect
of obtaining financial gain or other economic benefits (although it is
permissible to compensate or reimburse research participants for their
time, inconveniences and expenses, unless it constitutes undue
influence). Therefore, in order to determine whether the risks of “nontherapeutic” research are socially acceptable, one should compare them
with the risks of other purely optional and noncommercial social activities
voluntarily undertaken by competent adults in order to promote welfare
of other unrelated, unknown individuals. A good example of such activity
is a living tissue or organ donation for transplantation. Taking into account
art. 10 of the Additional Protocol to the Oviedo Convention concerning
Transplantation of Organs and Tissues of Human Origin, I will claim that if
national laws allow for a living organ donation for the benefit of an
unrelated recipient, the risks of such donation may be used by national
RECs as comparators for acceptable risks of “non-therapeutic” research
involving healthy volunteers. If there is no such legal option, living tissue
donation may serve as such a comparator.
ORGANISATIONAL DETERMINANTS IN PROCUREMENT
AND TRANSPLANTATION PATHWAY: FROM EVIDENCE
REVIEW TO ORGANIZATIONAL TOOL-BOX
1
3
2
1
F. Rubba , E. Giancotti , G. Mancini , M. Iannuzzi , L. Mancini, M.C. Tritto,
R. Carrano, A. Nardone, M. Triassi
1
Federico II University Hospital, Italy
2
G d’Annunzio University, Italy
3
Napoli 1 Centro, Transplantation and Procurement Coordination Area,
Italy
[email protected]
The growing disparity between organ availability for transplantation and
the number of patients in need has challenged the donation and
transplantation community of practice to develop innovative processes,
ideas, and techniques to bridge the gaps. Advances in the sharing of best
practices in the donation community have contributed greatly over the
last 5 years. In particular, studies published in last five were analyzed, in
order to gain an insight to the evolving scenario of organisational areas
and tool that the procurement and transplantation pathway are focused
on.
The organisational hypothesis that has been assessed is that networking
and efficacious handling of this complex path may be ameliorated by an
adaptative organisational tool-box
Search has been conducted in various database: Cochrane library,
PUBMED, EMBASE, Federico II University Open Archive. Evidence were
140
UNESCO Chair in Bioethics 9th World Conference
assed following EPOC criteria. Prevalent organisational attitudes and area
were assessed and various scenarios were analysed.
1059 studies were analyzed
64 were selected for full test analysis
We found 5 prevalent area of interest focused on organisational elements
Global Organisational strategies
• Education and communication
• Ethical concern
• Cognitive studies
• Handling waiting list
Among these areas three were discussed as prevalent:
• Global Organisational strategies
• Education and communication
• Ethical concern
As operative task, in order to becoming Scientific and informative HUB in
regional network we instituted an interdisciplinary working group in
Federico II University, joined with all Coordination area for
transplantation and Organ and Tissues transplantation. This team is
focused on ameliorate every step in a complex pathway, either in
procurement pathway or in housing a transplant program.
Our stand point is that the transplantation network is a great
organisational result of modern medicine: to sustain this network remain
an ethical milestone; to align every step in a “value obtaining” an “waste
avoiding” organisational pathway toward good practices, can help.
THE SPIRITUAL ASSISTANCE
Adolfo Russo, Italy
The author intends to develop a reflection starting from the existing
situation about a spiritual assistance to terminal patients. He argues that
different praxes, depending on cultural contexts and particular
sensibilities, represent a complex operative horizon. This report lingers on
analysing the epistemologic identity of spiritual assistance. The author
points out the dubiousness of the question in order to avoid a reductive
confessional approach and at the same time to let a more extensive
perspective on an aperture to transcendence of every human being. We
need to define the relations of spiritual assistance with other knowledge
and with similar operative scopes such as psychological, familiar, social
ones. Finally, there arise a number of conclusions meant to point out the
positive and peculiar role of the spiritual assistance as related to a regard
of the sense of life, to whole human relations, to the possibility of a
beneficial effect on health.
THE HUMAN EMBRYO BETWEEN RES AND PERSON
INSPIRED FROM THE LEGAL DEBATE OF THE ANCIENT
WORLD
Osvaldo Sacchi, Second University of Naples, Italy
[email protected]
In a recent article by A. Giubilini and F. Minerva published in the Journal
of Medical Ethics [After-birth abortion: why should the baby live? 2012,
pp. 1-4] supports the thesis, really surprising, that the fetus and a
newborn would be deprived alike of the moral status of personhood. The
ontological human embryo statement leads me to reflect on the theme of
the person in relation to the figure of the unborn child, a theme that
actually touches the raw nerve of the contemporary debate on human
rights. It seems incredible but it is still difficult to say exactly what is a
person and what is a human embryo. One reason for the delay in a
correct definition of these concepts is certainly that the former has had to
deal with, in the West at least two major anthropological mutations which
covered the true idea of human beings. Primarily the notion of the person
built on the basis of the Aristotelian principle of non-contradiction (with
Roman law and theology of the Nicene fathers) and the subsequent
discovery of the notion of the individual (principium individuationis) by
medieval scholastics (with Boethius, Thomas and Duns Scotus). Then the
modern notion of the individual as a bare unit according to Hegel. My
work will aim to provide a definition of the human embryo in both a
historical and a legal perspective by comparing the theological, religious,
philosophical and scientific inquiry to arrive at a definition of an
epistemological status (res or person?) that it is a useful utility for the
current legal framework.
INSTITUTE OF BIOETHICS CLINICAL ETHICS CONSULTATION
OF UNIVERSITÀ CATTOLICA: ANALYSIS OF AN EXPERIENCE
D. Sacchini, R. Minacori, A.G. Spagnolo, “A. Gemelli” School of Medicine,
Università Cattolica del Sacro Cuore, Italy
[email protected]
The clinical ethics consultation (CEC) is a form of expertise that could help
health care providers, patients and their families, in case of moral
conflicts arising in clinical practice. This paper presents the experience of
CEC Service at the "Agostino Gemelli" University Hospital in Rome,
headed by the Institute of Bioethics at the Università Cattolica del Sacro
Cuore (UCSC).
Since its establishment in 1992, the UCSC Institute of Bioethics UCSC has
performed CEC, and finally in 2012 a service was formally set up.
Considering the activities carried out from 1994 to 2012, 135 CEC were
made “on demand”, 124 of them since 2000. Requests were received
from the following clinical departments: Pediatrics / Neonatology (38
cases, 28.14%), Gynecology and Obstetrics (34 cases - 25.18%), Internal
Medicine / Infectious Diseases, Cardiology, Endocrinology (32 cases 23.70%), Neurology (14 cases - 10.37%), Surgery (5 cases - 3.70%),
Oncology (5 cases - 3.70%), Hospice (4 cases - 2.96%), Intensive Therapy
Unit (3 cases - 2.2%).
Single or combined ethical issues were recognized: cardiopulmonary
resuscitation (in the terminal phase of illness or extremely low birth
weight babies); mechanical ventilation withholding/withdrawing;
limitation of care in advanced / terminal stage of illness; parenteral
nutrition; dialysis; use of antibiotics and blood transfusions; fetal
malformations; tumors; tracheostomy in patients with chronic
degenerative neurological diseases, metabolic diseases, therapeutic
proportionality; patient’s/surrogate’s will; resource allocation; ectopic
pregnancies; cesarean section for preterm babies.
DIGITAL SOCIETY: NEW CHANCES AND NEW DIFFERENCES
Giacomo Sado, Italy
In 2020 our societies will become digitals. Our consumes, free-time, work,
relationships, advertisements and promotions will be differently
managed. Even traffic will be else ruled. Since 2010 it has been possible to
watch on the web a prophetic video. Future as seen, analyzed and
performed now in 2013 seems to be gone yet. Technological revolution,
despite economic crisis, has come on in leaps and bounds. The 2020 is the
conventional date that, full of opportunities, hopes and illusions, is getting
closer. In the previously mentioned video everybody will feel better, even
social pressures will be toned down. Impossible, you will say. In reality
digital society will not donate anything except to them who will benefit
from digitalization itself. And what about the others, the one who has
been excluded? They will feel worse. The gaps between the two will
necessarily become more huge. And the need of a commitment for
disadvantaged people will increase, first of all to extend them the
development benefits. Otherwise it will happen a new enormous social
injustice, one of the most grave in our history.
THAI TEACHERS’ OPINIONS AND REFLECTIVE THINKING
ON ETHICS IN SCIENCE FROM PARTICIPATING IN AN
ACADEMIC SERVICE PROJECT FOR SCIENCE TEACHER
DEVELOPMENT
Washirasorn Saengsuwan, Suan Sunandha Rajabhat University, Thailand
[email protected], [email protected]
This study is a survey research study. The objectives were to study 1)
participants’ opinions on teaching ethics in science classroom and 2)
participants’ thinking reflection on an academic service project entitled
the development of scientific mind and scientific ethics for science
teachers. This project was organized by science program, faculty of
education of Suan Sunandha Rajabhat University during July 12-13, 2013
at Ban Sapanboon (House of Merit Bridge) in Nakhon Pathom province of
Thailand. The project activities consisted of 1) meditation 2) disquisition
on spiritual and intellectual development and 3) training workshop on
teaching ethics in science classroom. Participants included school
director, educational supervisor, in-service teachers and pre-service
teachers. A project evaluation form, an online questionnaire and
Abstracts of Oral Presentations
reflection writings only from in-service and pre-service teachers were
used to collect data. Mean, standard deviation and content analysis were
employed to analyze data.
The findings found that most participants thought that they gained new
knowledge and ideas about ethics and intellectual development from this
project which is a good one. More importantly, all participants thought
that this kind of project should be continually organized in the future.
More results from an online questionnaire and reflection writings will also
be presented and discussed.
SCIENCE AND LAW IN THE AGE OF GENETICS
Silvia Salardi, University of Milano-Bicocca, Italy
[email protected]
Genetics poses new dilemmas reflecting on the way science and law
interact.
Are human beings free? How to contrast strict deterministic views? How
to combat discriminatory practices and policies based on the genetic
make-up? Which values inspire the legal framework? What are its
potential impacts on shaping socio-political policies? What kind of law for
what kind of society?
THE HERITAGE STATISTICAL-INFORMATION INAIL ETHICS
AS A TOOL IN THE SERVICE OF THE SOCIETY IN RESPECT
OF THE DIGNITY OF THE PERSON
Alessandro Salvati, Italy
[email protected]
INAIL – The Workers Compensation Authority – pursues several
objectives: the reduction of accidents at work, the insurance of workers
involved in risky activities; the re-integration in the labour market and in
social life of work accident victims.
This type of insurance, compulsory for all employers hiring workers in
activities which the law defines as risky, protects workers from any kind of
damage resulting from work related accidents and occupational diseases
freeing employers from any civil liability.
The safeguard of workers is now more than ever an integrated protection
system ranging from prevention on the workplace to health and economic
benefits, medical treatment, rehabilitation and reintegration in the social
and working life of victims of physical damage consequent to a work
related accident or professional disease.
With a view to contributing to the reduction of accidents, INAIL has also
implemented a number of important tools to continually monitor
employment and accident trends, it provides small and medium size
enterprises with training and advice in the field of prevention and funds
companies that decide to invest in the improvement of safety.
Over the years (INAIL was born in March 1933), at the institutional
activities, has been added – ever more pressing – the demand for data on
accidents at work and occupational diseases, assigning a central role to
information and dissemination on various levels.
INAIL has also an enormous heritage statistical-information (databases,
open data, publications, etc.), representing an ethical tool in the service of
the Society (government, research institutes, universities, responsible for
the prevention, students, citizens) while respecting the dignity of the
injured person and of his family.
The privacy of injured workers is always guaranteed at all times in
compliance with the guidelines of the European Statistics Code.
THE RIGHT TO SELF-DETERMINATION AND END-OF-LIFE
DECISIONS: THE ROLE OF THE FIDUCIARY
Barbara Salvatore, Università degli Studi di Napoli Federico II, Italy
The patient’s right to express a conscious and informed consent to
medical treatment can be expressed, not only in positive aspect, in the
form of consent to the therapeutic intervention, but also in its negative
aspect, in the form of a refusal of the proposed therapy.
The Italian Constitutional Court gives a clear teleological definition of this
right, whose function is to enable the self-determination of a patient and
to safeguard his/her health (C.C. n. 438/2008). The recognition that
consent no longer concerns only the patient’s health, but is above all an
141
expression of his/her fundamental right to self-determination, has
important repercussions in terms of the effective realization and
protection of the right.
The problem focuses on admissibility and the value to be attributed to
any directives regarding treatment the person may have previously
expressed fearing a future loss of capacity. In fact, the possibility to
expressed personal determinations before the onset of disease and the
occurrence of an emergency situation collides with the need that the will
of the patient follows and is the result of the information provided by the
doctor at the time treatment is required.
In this context, the research will test the usefulness of appropriate
technical and legal institutions, such as a fiduciary, in adapting the
patient’s advanced directives to the actual pathological situation. In fact,
based on current Italian legislation and in the absence of specific
legislation, according to the most recent doctrine and jurisprudence, the
instrument of “administration of support” is able to concretise the
patient’s wishes in the context of the relationship of care. In fact, based
on articles 404-413 of the civil code, Courts consider the patient’s
previous declarations relevant.
The aim of this research is to verify, through comparison with recent
European legislation, the effectiveness of the Italian judicial solution in
the attempt to answer the above-indicated problems.
ETHICAL ISSUES IN THE CLINICAL DIAGNOSIS OF
HUNTINGTON DISEASE
Elena Salvatore, Luigi Di Maio, Silvio Peluso, Felice Iasevoli,
Giuseppe de Michele, Università degli studi di Napoli Federico II, Italy
[email protected], [email protected]
Huntington Disease (HD) is a dominant disorder caused by a CAG repeat
expansion in the HTT gene, characterized by progressive basal ganglia and
cortex degeneration, leading to motor, psychiatric, and cognitive
disturbances.
While there are international guidelines for predictive genetic test in
subjects at risk, no statement exists for diagnosis of HD. A specific
abnormalities may be present many years before disease onset, but the
presence of unequivocal motor signs, usually chorea, is required for
clinical diagnosis. Therefore, when chorea is not evident, as in
hypokinetic/rigid forms or in patients with cognitive or psychiatric onset,
the decision to proceed to diagnostic testing represents a complex ethical
issue.
We present two illustrative cases. A parkinsonian syndrome developed in
a 40 -year-old lady at risk for HD, treated with neuroleptics for psychosis.
The short period and the low doses of therapy challenged an iatrogenic
origin of parkinsonism and a molecular test for HD diagnosis was
considered to guide further treatments and obtain a disability pension
and other welfare benefits. On the other hand, an early clinical diagnosis
could worsen symptoms and expose to social discrimination. Moreover,
the psychiatric illness could raise legal issues about the informed consent
for the genetic test. The second case was a 16-year-old mentally retarded
at-risk boy who developed behavioural changes and hypokinesia. Juvenile
HD was suspected and a molecular test was performed. A 40 repeat
expansion was found, which was not likely to explain the early-onset
symptomatology and could represent an undesired predictive test in a
minor.
ETHICAL ISSUES OF INSURANCE MEDICINE
E. Sanikidze, I. Manjavidze, Davit Tvildiani Medical University, Tbilisi State
Medical University, Georgia
[email protected]
Aim and Objectives: To determine ethical issues of insurance medicine via
analyzing statistical data and questionnaires
Methods: 2000 Medical forms, official statistical data of 5 insurance
companies and 500 questionnaires were elaborated
Results: In most of cases insurance companies(IC) provide high quality
medical service (MS) for general population. But from other hand,
because of various versions of insurance, as well as services exceptions,
patient’s rights and main ethical principles are not maintained. In our
study, ICs denied in funding in 27% of all requests, 31% were funded
partially, 42% received full financing. “Do not harm” principle were
breached because of bad time management and procedures needed to
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UNESCO Chair in Bioethics 9th World Conference
receive warrantee letters. “Beneficence” and “Autonomy” principles were
breached because of absence of free choice of provider clinic. Principle of
“Justice” is more maintained, as each citizen has access to MS. But
corrections still needed, as beneficiaries of various ICs have various
accesses to MS with different quality. In addition, ICs determine pricing;
breaches business interests of private clinics, when providers can’t
receive own funds in time.
Conclusion:
1. For general population Health Insurance is the only way to receive MS,
especially in the low and middle income countries.
2. To protect patient’s and clinic’s rights, maintenance of Ethical
principles and norms are obligatory
3. To foresee ethical issues during elaborating of health care policy and
insurance medicine legislative norms will provide high quality of
medical service for insured population.
THE FIFTEEN YEAR EXPERIENCE OF THE BIOETHICAL
COMMITTEE FOR VETERINARY MEDICINE
Pasqualino Santori, President, Bioethical Committee for Veterinary
Medicine, Italy
[email protected]
The object of the Committee is the study and the informed and expert
discussion of the principal moral problems that human beings encounter
when relating to non-human animal world and that are highlighted with
greater intensity in the practice of the Veterinary profession.
Compared to the past centuries, in the last decades, the moral
consideration towards all animals, and also, at the same time, but in
completely different directions, the medical techniques for pet animals
and the breeding practices for income animals, have changed radically.
The bioethical problems have increased more with globalization and
presence nowadays of a diffusion of persons of different cultures and
religions with consequent different practices with the animals themselves
(as in regard to ritual slaughtering, for example).
The Committee is composed of a minor number of Veterinary Surgeons
and of members of different professions and of different ideas who deal
with animals, besides jurists and philosophers.
The working method foresees an initial agreement on the importance of
the problems and a constant research for opposite thoughts and ideas in
order to find an agreeable point of view.
The following documents have been produced; Animal transport –
Informed Consent in Veterinary Medicine –Animal Euthanasia –
Slaughtering – Dangerous dogs – Genetic ill-treatment – Animals and
Economic Crisis.
REDUCING MEDICAL EDUCATION COST WITH CROSS
SUBSIDY
Djoko Santoso, Dodo Anondo, Airlangga University School of Medicine,
Dr. Soetomo Teaching Hospital, Indonesia
[email protected]; [email protected]
Introduction: In March, 2013, the Minister of Education have stated in
front of the Parliament that the government wants to reduce medical
education cost. As we know that medical education process is very
complex and requires high cost. The government realized that the
outcome of managing medical education cost is the increasingly
affordable healthcare service. The reduction will be possible by including
the cost element into the Draft of Law on Medical Education. Without the
reduction, the quality of medical education in Indonesia is at stake.
Purpose: This may be the first full-cost analysis of medical education in
Indonesia. Fully subsidized medical education has given way to a system
combining student-paid tuition and fees and the support from
government subsidies. Our approach was simple and provided useful,
new information to all sides for solving financial problems of medical
education.
Materials and Methods: The study has been based on data from 20112012 academic year, with student body in the university in a year is
25,000. From these, 3,750 are studying at the Faculty of Medicine, 1,000
out of this number are those studying medical education. Twenty-nine
departments and 15 supporting units engaged in educational activity in
the study period. Instruments consisted of questionnaires on the activities
of each department or unit, and the source of financial support (for
courses, administrative affairs and research, funding from other sources
outside the faculty), and attention from the management (including the
Rector and the Dean). Statistical analysis was used to analyze the use of
budget from departments and financial support.
Results: In the budgeting of medical education, the costs are classified
into indirect cost and direct cost. Indirect cost ($ 1,410,808) consisted of
salary (63%), incentive of teacher (18%), honourable of professor (11%),
extra living cost (8%). Whereas, the direct cost ($ 1,543,915) was grouped
into operational cost (66%), management cost (22%), and development
cost (12%). Operational cost ($ 1,023,399) supported activity 32%, course
22%, laboratory works 18%, final assignment 8%, curriculum 7%, quality
control 5%, student affairs 3%, annual planning 2%, invited lecture 1%,
and literature 1%
Discussion: Nearly 60 %t of the budget is absorbed in the process of
educational operations. PBL system demands the existence of expert
lecture, moderator, clinical case scenario makers, and evaluator, not to
mention module system oriented medical skill that requires the
arrangement of student modules, tutor modules, and scenario makers. It
is worth to know that medical students, in average, requires
approximately $ 1,000 – 1,500 per year. The existing subsidy, $ 2,000 –
3,000 for each new doctor, still does not allow to reduce the overall cost
of medical education. Therefore, the state should take over $ 1,000 –
1,500 per year, which should be included in the law of medical education,
so that medical education can be more affordable for all. Those costs are
recently still included within 60%of the operational cost. The state budget
should be spent for the best brains who will guard the health of the
nation.
Conclusion: Cost-effectiveness (60% of the operational cost) for
economically-poor students will be suggested to be included in the Draft
of Law on Medical Education. Public or the students themselves bear the
burden of 60% ($1,000 to $1,500/student) in the process of medical
education each year.
CONSCIENCE AND BIOETHICS:
WHAT IF EVERYBODY WERE OBJECTORS?
Michele Saporiti, University of Milano-Bicocca, Italy
[email protected]
In the last decades, conscientious objection went through a deep
transformation. It has acquired a specific legal dimension as the right of
conscientious objection. This change has deeply involved bioethics,
starting new challenges in contemporary society.
The right of conscientious objection was born as an instrument to
safeguard people’s liberty of conscience. Its application is particularly
sensitive in specific bioethical fields. As a matter of fact, the choice to
object can deeply impact on a third person’s rights, as it happens for
objection to abortion, medically assisted procreation and vaccinations.
But what if everybody were objectors?
A good starting point is the objection to abortion in Italy, where in some
regions the percentage of objectors is nearly 80% in public hospitals. We
could argue that the easiest solution is to forbid people to object. But
would it solve the problem? Or could we produce major political and
social problems? How can we find a possible solution, in terms of
fundamental rights’ balance?
BIOETHICAL DEMAND FOR CLINICAL PHARMACOKINETIC
Abdul Halim Sawas, King Abdullah International Medical Research Center
(KAIMRC), Saudi Arabia
Clinical applied pharmacokinetics is the process of using drug
concentrations, pharmacokinetic principles, and pharmacodynamic
criteria to optimize drug therapy in individual patients. Optimization is
accomplished primarily by minimizing the probability of toxicity, while
with other drugs, benefit are achieved by increasing the probability of the
desired therapeutic effects such as cancer therapy. Both form a solid
bioethical justification for Clinical Pharmacokinetics application. Presently
therapeutic drug monitoring is applied for common narrow therapeutic
window drugs, but its use for anticancer and other bioethical hazardous
drugs has been limited. Recent evidence indicates that certain
pharmacokinetic parameters, including trough levels, are correlated with
clinical outcomes for many recent anticancer agents. Trial and research
should be encouraged bioethical to monitor and determine the steady
Abstracts of Oral Presentations
state trough measurement of target agent for clinical care of patient and
to minimize adverse effects. Principle, importance, and clinical application
of both therapeutic drug monitoring and both dosage adjustment and
predication would be presented. Conclusion clinical pharmacokinetic
services are bioethical required for patient safety and drug efficacy.
GUIDELINES BETWEEN THE PROTECTION OF THE
PATIENT'S HEALTH AND ECONOMIC CONSTRAINTS
S. Sblano, A. Bonsignore, B. Solarino, Alessandro Dell’Erba, Italy
[email protected]
The role of medical guidelines and their impact on our society is
undeniable. They began as "systematically developed statements to assist
practitioner and patient decisions about appropriate health care for
specific clinical circumstances" (Institute of Medicine, 1992) to ensure the
protection of public health, which is an inviolable constitutional right,
through the pursuit of the best healthcare quality standards for the
citizen. The absence of appropriate strategies for the use of economic
resources has instead resulted in the increasing use of rationalization and
compatibilization measures that aim at achieving affordability along with
time and cost savings. The outcome is that the right to healthcare is
inevitably “financially conditioned”.
nd
However, in Italy the Court of Cassation (Cass. Pen., Sez IV, March 2
2011, no. 8254; Cass. Pen, Sez. IV, September 19th 2012, no.35922),
address the relationship between, on one hand, the need for care and/or
“best care” and, on the other, regulations and costs, upholds in line with
the personalistic principle embraced by the Italian Constitution that
medical decisions should be grounded on patient best interests and not
solely on economic considerations.
The authors examine these aspects and in particular analyse the position
of the Italian Constitutional Court, which stresses that healthcare must
address both legal and financial issues in order to ensure full patient
protection and comply with the provisions of the so-called “Balduzzi
decree” (subsequently converted into Law 189/2012).
ETHICAL VALUES OF A MULTICULTURAL
AND MULTIETHNICAL SOCIETY:
AOSTA VALLEY REGION’S EXPERIENCE
Patrizia Scaglia, Family and Juvenile Policies Service – Aosta Valley
Autonomous Region, Italy
[email protected]
The speech, starting from a short description of the migratory
phenomenon, will tackle integration’s governance, especially in the
mountains.
We highlight the complexity of the integration process and the goals that
integration policies have to set.
Finally we will describe what Aosta Valley Autonomous Region has done
so far to promote immigrant people and immigrant families’ integration.
HETERONORMATIVITY, HOMOPHOBIA AND
TRANSPHOBIA IN SPORT
Cristiano Scandurra, Simona Picariello, Anna Lisa Amodeo,
Francesco Muollo, Antonello Sannino, Paolo Valerio, Giuliana Valerio,
CIRB - Bioethics Research University Centre of Naples, Italy
[email protected]
Sport, both at professional and amateur level, is an area where a strong
split between sexes endures and gender stereotypes seem to be settled.
Due to its heteronormative matrix, sport is a rich soil for discriminations
and aggressions, not only against lesbian, gay, bisexual, and
transgender people but also against heterosexual people who do not
conform to the expected gender roles. Such matter produces a barrier to
full participation in sport practice. In 2010 the Committee of Ministers of
the Council of Europe stated that discriminations based on sexual
orientation or gender identity within sport are unacceptable and that it is
urgent to fight them through prevention and awareness policies. In
contrast with other nations, Italy results to be backward in the
achievement of these objectives.
143
In order to assess the incidence and the nature of homophobia and
transphobia in sport, the study group “Pluralities of identities, gender and
sexual orientation issues: between bioethics and bio-law” of the Bioethics
Research University Centre in Naples started a survey on knowledge,
opinions and attitudes related to gender and sexual orientation issues
within sport, whose target is represented by undergraduates attending
several faculties at both Federico II and Parthenope Universities of
Naples. The outcomes of this survey will provide a useful knowledge base
for starting training programs addressed to different leading professionals
from sport facilities. In addition they are intended to arise politicians’
awareness in order to efficiently fight discriminations based on sexual
orientation or gender identity in sport field.
MEDICAL DATA PROTECTION: A FUNDAMENTAL RIGHT
IN THE HI-TECH AND INFORMATION SOCIETY
Fernanda Schaefer Rivabem, Estácio University and University Center
UniCuritiba, Brazil
[email protected]
The Medicine reaches the beginning of the XXI Century strongly
influenced by the advance of biotechnology that sponsors, among other
things, the introduction and spread of Telematics in Health. Another
pressure on the medical practice is the development of so-called
Information Society, which brings great economic interest on personal
data. Clinical data starts to be economically coveted by multinational
pharmaceutical and certain government sectors that sees in them not
only a way to provide scientific advancement, but also an opportunity to
promote various marketing strategies and various forms of social
control. It is against this technological and informational framework that
shows the concern to protect clinical data, by their nature, are considered
sensitive. The objective of this communication is to determine the social
and informative clinical data dimension and how to protect them, since
their improper use can cause the degradation of human dignity and even
be justifying new forms of xenophobia. To do this it is necessary to resize
the privacy in order encompass the notion of informational selfdetermination, providing the owner the control over them and, therefore,
the development of his personality and the freedom to hold existential
choices. There is no doubt that biotechnology has defining new forms of
interaction between information and privacy and, therefore, has
unquestionable social relevance. Therefore, this context requires a firm
action from law in order to protect the human person, recognizing that
new values need to be protected in the face of emerging technologies.
THEOLOGICAL REFLECTION ON PAIN AND SUFFERING
Ignazio Schinella, Italy
The Author presents the exact position of Catholic Church on pain and
suffering, especially the sacredness of life and the adequacy of the care.
At the light of resurrection he propones the right to die because for
Christians life is not an idol: Christians are friends of life, but not
idolatrous.
MARRIAGE IN ITALY BETWEEN PERSONS OF
THE SAME SEX
Alessia Schisano, Fabio Corbisiero, Italy
[email protected]
On the way towards the “global” discussion about the recognition of
human and civil right which includes a huge amount of scientific data
concerning social inequality, Europe is trying to face any discrimination or
intolerance thanks to the EU Treaty, its rules and directives, overcoming
the risk, inside democratic system of government, of an unconceivable
subordination of some minorities and others that is the majority. From
this point of view, the twenty-first century reflects an increasing
awareness of legal systems inside the Member States about the rights of
homosexuals, based on the principle that all European citizens, as such,
are equal in value and dignity and to quote the words of Nussbaum
(2010), "based on the principle that those who share the same humanity
must also participate in the same equality" (p. 96). In Italy, the de facto
relationships, both between heterosexual and homosexual citizens are
not legally regulated, with the exception of a few rulings on the merits or
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UNESCO Chair in Bioethics 9th World Conference
issued by the Supreme Court seeking in some way to facilitate the daily
lives of the partners extending forms of protection and warranty. Besides
in Italy, marriage is not even allowed between persons of the same sex,
although it emerges a clear need to remove from legislation all forms of
discrimination and unequal treatment between heterosexual and
homosexual citizens, on the basis of sexual orientation and in accordance
to the application of the principle of equality laid down in Article. 3 of the
Constitution. Anyway, to guarantee the same legal value to both gays and
lesbians feelings, a "simple" modification of the Civil Code would be
needed that is the berating of the terms "husband" and "wife", replaced
by the neutral word of "spouses" (Article 107, paragraph I, art. 108
paragraph I, Art.143, paragraph I. / art. 294, paragraph II) and expand the
scope of Article. 90 Civil Code, inserting art. 90a, stating that "marriage is
subject to the same conditions and the same effect regardless of whether
the spouses are of different or the same sex." There are many bills filed in
this regard in Parliament which to date have not become laws.
Ethics as process and practice. Internal Medicine Journal 2004; 34: 355–
357) – from actions to actors, from single decisions to the stories we are
involved in as related persons, a narrative approach to ethical reasoning is
required. The “basic action” of ethics in this perspective is not to apply
moral principles to “cases” represented in medical facts but, on the one
hand, to think about everyday existential issues on the basis of stories,
and, on the other hand, to connect with other persons through stories.
The presentation will outline such an approach to clinical ethics
consultation regarding methodological and organizational aspects, and its
opportunities and limitations.
TOWARDS THE 21ST CENTURY –
HEALTHY LIFESTYLE REQUIREMENTS;
LAUDABLE OR PATERNALISTIC MEDDLING
A. Scuotto, D. Faillace, E. Meccariello, D. Del Forno, P. Di Lorenzo,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
L. Schoeman, University of Pretoria, South Africa
[email protected]
With the participation of the psychologist in the ethical Committee of the
Università of Naples Federico II “Carlo Romano”, data were collected on
the basis of the observations made in the preparatory stage and discussed
in the plenary session.
Such data collection has resulted into a complex and multifaceted picture.
The sample taken into consideration concerns more than 500 protocols;
the analysis has revealed critical areas to which great attention must be
focused in elaborating information according to the complexity of the
studies, the age of the population involved and the psychological
importance of the disease for the subject affected.
The analysis has been carried out by evaluating the contents’ compliance
to regulatory aspects, and this, to ethical – legal principles as well as the
quality of information as to clarify, exhaustiveness, communicational
intelligibility and synthetical capacity.
The study has been expanded by identifying the areas of biomedical
research receiving the greatest number of information considerations
that have resulted to be pediatrics, neurology and oncology. This fact has
also shown that those areas where age, disease severity and psychic
conditions (in which being aware or unaware of one condition is very
important) deserve more attention to goal is thus to reconcile two needs:
1) to supply to the subject all the information that will permit on aware
decision with the appropriate ways, contents and communication process
allowing a perfect knowledge of every aspect of the trial.
2) to produce an effective set of information fulfilling synthesis criteria
(as, indeed, recommended by the norms) avoiding to activate information
that do not take in due consideration the subject’s cognitive peculiarities
because of its redundant and prolix contents which might be considered
as the product of a “defensive medicine”.
Hence the creation of a reference model for information forms capable of
satisfying strictly regulatory requirements as well as more specified
communicational needs.
With the expansion of medical and epidemiological knowledge in the 21st
century, more opportunities to avoid causing harm to self and others
through healthy lifestyle choices exist. This then raises the question how
far each person’s responsibility for the health of others might extend? Is it
ethical to decide what is best for other people –and is it ever ethical to
condemn other peoples’ lifestyle choices? According to Verweij, one
could also be concerned that a pervasive and continuous emphasis on the
risks of disease and the promotion of health might lead to a neglect of
other things of value, such as pleasure, courage, individuality, or being
carefree.
Hundred and twenty patients with type 2 diabetes were entered onto a
randomised study where they were encouraged and motivated to have
healthy lifestyle habits, Their HbA1C levels and quality of life were
measured. They also answered an open-ended question on their
perception regarding the reasons why they made their lifestyle choices.
The results indicated that most patients felt that their lifestyle decisions
were autonomous and that it was the “right” decision to make. Many
indicated that they felt “good” or “happy” about their choices. Others
indicated that it was their illness, and not people, that forced them to
make the lifestyle changes.
The ethical question is if the laudable objective to create a context in
which people can live a healthy life, also provide a reason to meddle with
almost all aspects affecting their lives. This will be discussed.
ORGANIZING SPACES FOR EVERYDAY ETHICAL
REFLECTION: A NARRATIVE APPROACH IN CLINICAL
ETHICS CONSULTATION
Patrick Schuchter, University of Klagenfurt, Austria; Institute of Palliative
Care and Organizational Ethics, Austria
[email protected]
It is noteworthy that in present-day clinical ethics consultation – but also
more general in applied ethics, in the theory of medical ethics – a
reductionist understanding of “ethics” is presupposed to a large extend. It
seems that in this perspective “ethics” is primarily concerned with
decision making when a moral dilemma occurs during medical treatment
processes. But in the long philosophical tradition ethics goes far beyond a
moral problem solving process. It deals with the pursuit of the “good life”
by means of everyday reflective practice on existential issues like success
or failure of life plans, friendship, finiteness of the body, fear of death,
dealing with loss. Questions concerning these issues come to the fore
particularly in (“border”-) situations of weakness, dependency, illness,
and when facing death. Treatment decisions have to be seen as situated
in a continuing reflective and dialogical process of the art of living and
dying by which the practical wisdom of both patients and health care
professionals develops and is challenged. Such a broader view on ethics
has an impact on the methods of clinical ethics consultation and on how
ethics consultation should be organized in health care settings. With the
1
shift – as Arthur W. Frank puts it (Frank Arthur W: Ethics in medicine.
INFORMATION AND CONSENT, ANALYSIS OF THE
EXHAUSTIVENESS OF COMMUNICATION AND ADEQUACY
OF INFORMATION IN BIOMEDICAL TRIALS WITH THE
PARTICIPATIONS OF THE EXPERT IN PSYCHOLOGY
ETHICAL CONSIDERATIONS IN LEGAL REPRESENTATION
OF OLDER CLIENTS WITH DIMINISHED CAPACITY OR
IMPAIRED COMPETENCE
Meytal Segal-Reich, Ministry of Justice, Israel
[email protected]
Most older persons will not have diminished capacity. Such status can be
a result of a physical illness, emotional distress or an accident and is
never, as itself, a result of "old age". However, dementia, for instance, is a
physical situation which might reduce decision-making ability and might
therefore result in diminished capacity. Research shows, that the
prevalence of different dementias increases with age.
Legal representation of older persons with diminished capacity provides
lawyers with unique ethical challenges. These may be even greater, when
clients are in early stages of dementia and show only signs of reduced
decision making competence. Their capacity hasn’t been diminished, but
due to their lower competence, their lawyers have special considerations
in providing their professional duties.
Abstracts of Oral Presentations
According to rule 1.14(a) of The American Bar Model Rules of Professional
Conduct, "When a client's capacity to make adequately considered
decisions… is diminished whether because of minority, mental
impairment… the lawyer shall…maintain a normal client-lawyer
relationship…” The rules do not offer concrete guidelines as to what is
considered a "normal" "relationship". The law and the professional codes
of ethics in Israel also do not provide answers to these unique ethical
situations. Lawyers are expected to act based on high professional
standards.
Lawyers must make necessary adjustments in respecting these client's
rights. They should offer the conditions that will make it most possible for
the clients to express their will, needs and expectations from the legal
service. They should also ethically balance the competing goals of
autonomy and protection.
ETHICS AND EMPATHY IN THE THERAPEUTIC
RELATIONSHIP
Elio Sena, ASL RM/A, Italy
[email protected]
In an elaboration of the themes introduced at the previous sessions
(Napoli – Tiberiade 2012; Napoli 2013 with Dr. Maurizio Piazza), the
author will examine the problem of the relationship between Ethics and
Empathy in the therapeutic relationship, above all with reference to his
own experience in Psychiatry and Psychodynamic Psychotherapy,
garnered over twenty years of professional activity both in the public and
private spheres. The limits and characteristics of the development of the
themes of Ethics will be compared with those of Empathy, using a
modality passing from analysis of the differences between Organizational
Ethics and Individual Ethics on one hand and Professional Empathy and
Personal Empathy on the other. With the aim of best safeguarding Health
and Dignity, Empathy and Ethics entwine in the treatment of each single
Patient and where one tends to expand to the detriment of the other, the
control by the Doctor or of any Professional figure involved in the
therapeutic relationship is essential to redress the imbalance. The ability
to reduce this risk can only be guaranteed by an adequate preparation
which considers not only knowledge of the Moral Laws and the State Laws
but where possible also the sharing of intents and the comparison
between different professional Experiences.
BIOETHICAL IMPLICATIONS OF SYNTHETIC BIOLOGY:
A PRECAUTIONARY APPROACH TO RISKS OF NEW SCIENCE
A. Serra, I. Aquila, M. Chiarelli, G. Cuda, E. De Luca, S. Gratteri, C. Ricci,
P. Ricci, University “Magna Graecia” of Catanzaro, Italy
[email protected]
Introduction: Synthetic biology seeks to create modular biological
pathways that can be assembled into useful devices, allowing the
modification of biological systems with greater reliability. Scientific
progress in synthetic biology establishes relevant bioethical problems
about potential risks for environment and human health.
Objective: The objective of this study is to explain the aims of synthetic
biology, therefore to understand if that is technically possible is morally
acceptable.
Material and methods: A review of international scientific literature was
done with relevance about diagnostic tools provided by synthetic biology
and its bioethical implications.
Results: The aims of synthetic biology include: 1) the production of
minimal living genomes; 2) the design of interchangeable parts that can
be assembled into other pathways; 3) the construction of entirely artificial
and synthetic biomolecules. Synthetic biology devices can provide
different diagnostic tools: the design of novel strategies for the treatment
of cancer, immune diseases metabolic disorders and infectious diseases.
Of two approaches to synthetic biology, top-down and bottom-up, the
latter is more relevant to the development of personalized drugs for a
desired task. On bioethical implications of synthetic biology it’s essential
to identify an adequate balance between technological and scientific
progress and human and environmental protection. The most reasonable
solution is based on precautionary principle, and to act with caution.
Especially, in experimental studies it seems like to evaluate from time to
time all benefits and risks, and consequently to verify if the first exceed
the second ones.
145
Conclusions: The approach of synthetic biologist based on precautionary
principle should not be a limit to scientific research, but rather a cause to
improve the safety of future technological applications.
CONTRIBUTIONS FROM THE DISCUSSIONS HELD BY THE
NATIONAL BIOETHICS COMMITTEE ON SCIENTIFIC
RESEARCH AND THE ROLE OF ETHICS COMMITTES IN
ITALY
P. Severino, F. De Micco, M. Moccia, E. Meccariello, C. Buccelli,
International Office for Bioethics Research of the European Center for
Bioethics and Quality of Life of the UNESCO Chair in Bioethics Unit - Ethics
Committee “Carlo Romano”, University of Naples Federico II, Italy
The purpose of this article is the analysis of the discussions held in time by
the National Bioethics Committee (NBC) on the role and functions fulfilled
by Ethics Committees (EC) within scientific research.
The NBC has produced three contributions on the topic (in 1992, 1997
and 2007) and is about to publish a fourth one.
A first, immediate evolution of thought inferred from a combined reading
of the opinions concerns the functions entrusted to the ECs.
Initially (in 1992) the local committees were entrusted with the evaluation
of research protocols, while regional committees were entrusted with
consulting activities to government institutions. Later on, although the
separation of the functions of evaluation of healthcare and of ethical
assessment of biomedical research was maintained, the unity of the
functions was promoted (in 1997). Finally (in 2001) laws were passed to
distinguish the operative value of the opinions expressed, which became
binding and mandatory in biomedical research, and non-binding and
optional in clinical practice.
Another step in the evolution of thought of the NBC concerns the nature
of the opinion expressed by ECs.
While initially (in 1992 and 1997) their opinions were ascribed a purely
moral “value” as an element of mere decision-making guidance, later on
(in 2001) the full implementation of international standards in trials
caused the NBC to attribute binding value to the EC opinions concerning
pharmacological and biomedical research.
Finally, there has been a continuous evolution of thought of the NBC in
relation to forensic profiles concerning the activities of the members of an
EC.
Initially (1992) professional liability for EC members was excluded, as
reference was only made to operating according to the standards of care
and prudence. As years went by there was a change of course, to the
point that in the last document (2001) the definition is promoted of the
responsibilities attributable to members of the ECs for experimentation,
and the activation of appropriate insurance coverage for the performance
of the duties of the ECs, to be paid by reference structures, was promoted
as well.
ON THE VIOLATION OF SELF AUTONOMY OF PATIENTS
IN LIFETHREATENING CONDITION:
CAN A DYING PATIENT MAKE A REASONABLE DECISION?
Ehud Shalmon, Assaf Harofeh Medical Center; Ono Academic College,
Israel
[email protected], [email protected]
The Declaration of Lisbon on the Rights of the Patients states that data
needed to generate a well-informed decision should be provided to any
patient who has the privilege to authorize the appropriate medical
treatment suited to his personal condition. The Declaration protects the
self-determination of any person and ensures his autonomy to authorize
the best medical treatment and the freedom to decline it. However,
occasionally patients in life-threatening conditions deliberately make
medical decisions far beyond reasonable boundaries, which eventually
jeopardize their lives.
Three cases illustrate inadvertent and unintended threat to human life: 1)
Young adult who was stabbed in his chest and refused a simple lifesaving
surgery to repair cardiac injury. 2) Elderly person who for a few years
consistently declined an elective operation for abdominal aneurysm.
Eventually, a lifesaving urgent operation was required due to massive
intra-abdominal bleeding, which he still consciously declined. 3) Middle
aged actor who suffered a brain stroke but refuse lifesaving treatment.
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UNESCO Chair in Bioethics 9th World Conference
These cases represent a spectrum of very sick patients who, while in lifethreatening conditions, consciously refused lifesaving medical treatment,
at their own demise. These cases pin point the dilemma between
patients' autonomy and medical paternalism: what are the boundaries of
the best interest that any patient may have, is a patient in critical
condition capable of making rational decisions and who is responsible to
observe the "reasonable patient test" in an urgent situation, and finally,
to what extent should a society protects its member from being the victim
of his fatal decision.
A PLURALISTIC, MULTI-METHODOLOGICAL MODEL IN
CLINICAL ETHICS
Evyatar Shayevitz, Israel
[email protected]; [email protected]
My focusing is upon the manner or method that should be employed by
the physician or the relevant hospital committee when called upon to
reach ethical decisions.
The three contrasting methodologies upon which I will focus here are
• Principlism which states that moral justification for a particular action
emanates from the moral authority of the master principles
• Particularism which states that moral justification emanates from the
decision concerning the "good" of the specific patient.
• Casuistry which states that justification is anchored in the analogy
between a specific incident and a precedential incident.
On the basis of a philosophical investigation into the inner workings of
each one of these methods, I will argue that none of them can claim the
right to moral imperialism or even dominancy. Internal procedural
changes within the boundaries of each method are insufficient to
potentially improve the quality of the ethical decision making process. My
next argument will be that the practice of a single-method discourse pose
the risk of superficiality that is liable to have a significant impact on the
ethical decision.
In addition, I will further argue that recent years have seen a dulling of the
methodical polemics. There is an evident support, even if only implied, for
this methodical pluralism that supports multiple methodologies for
ethical action and the absence of moral imperialism of each one of them.
a society arguing in favor of pluralism and respects the differences
between human beings, as expressed in their religions, cultures, values
and differing world perceptions, is also committed to a dialogue and
agreements among differing ethical perceptions. A pluralistic dialogue will
support a change of opinions and an amelioration of the original ethical
decision.
On such background I will explore a new Pluralistic, Multi-methodological
Model in clinical ethics that tries to mix the best of Principlism and
Particularism in order to improve the ethical decision making process at
the "patient bed".
METHYLPHENIDATE FOR COGNITIVE ENHANCEMENT;
MYTHS AND FACTS
Nurit Shlafman, Beer Sheva Mental Health Center, Israel
[email protected]
The use of prescription drugs for cognitive enhancement is constantly on
the rise. "Smart Drugs" as Ritalin, Modafinil and Adderall are being used
by students, physicians and academic personnel around the world to
increase brain functions, alertness, concentration, memory and
motivation.
Methylphenidate (Ritalin) is a potent stimulant, indicated for the
treatment of attention deficit hyperactivity disorder (ADHD). The rates of
diagnosis and of stimulant prescriptions amongst adults are consistently
rising, as is their use by undiagnosed (healthy) individuals to improve
academic achievements.
Drug safety is a critical concern in debating the use of stimulant drugs
without medical indication amongst adults, as is their significant abuse
potential. Little is known about the effect of methylphenidate on healthy
individuals. The evidence for suggested improvements in memory and
overall cognitive functioning is inconsistent and vague regarding specific
neuro-cognitive functions and doses
The right of every individual to enhance their cognitive abilities must be
weighed against the risk of creating a competitive environment, in which
individuals may feel obligated to use medication, to keep up with a higher
set of standards. Is using medications for cognitive enhancement
cheating? The current debates regarding the accuracy of the diagnosis
amongst adults, and indeed whether it is a “disorder” or a spectrum of
neuro-cognitive “hard-wiring”, add to the complexity of the topic.
These significant ethical issues must be elucidated in establishing
guidelines for the prescription of neuroenhancing medication.
ASPECTS OF NORMATIVITY IN BIOETHICS
Tatyana A. Sidorova, Novosibirsk State University, Russia
[email protected]
The normativity offers to bioethics a balance between norms and
perceptions of normality, the final result of normalization. A norm is an
established value which fits to the accepted standard of normality. In
respect to morality, being presented in discursive form, the normality
possesses the ideas of wellbeing and welfare. In respect to legality, norms
define the benefits for society at-large that further are consolidated by
system of laws. Considering normativity in bioethics, it is important to
appreciate its central position between morality and legality. The complex
moral cases, the exquisite topics of bioethical discussions, arise when
disconnections between norms and perception of normality occur. For
instance, birth of child in the homosexual family exemplifies the
discontinuation between norms and perception of normality. Bioethics is
a multidimensional discipline; therefore, normativity is generated in
different ways resulting in multiplicity of norms. Though bioethics may be
viewed as system of theoretical knowledge, the discoveries gained in this
science carry enormous practical applications. Bioethics, as a field,
undergoes the long-lasting extension due to the discoveries in life science,
advances in medicine and innovations in life-related technology.
Existence, or development, of a moral position is justification for
normality which will be formulated as norm. Theoretically, normativity
reflects validity and characterizes knowledge. If the bioethical judgment
does not conclude in justification of norm, it has no have sufficient
strength and depth to be thoughtful. The ethical committees explore
events in respect to variety of opinions and formulate verdicts that
further serve as norms. Although such norms have limited implications
(advisory in nature), yet they create a framework of established values.
The bioethical knowledge is applied in many dimensions. First, it is
indispensable component of contemporary scientific methodology, where
bioethical discoveries define acceptable and unacceptable rules of
research. Secondly, the bioethical knowledge is intended for an extensive
public discussion. Third, the bioethics helps to reach didactic purposes in
educational institutions. Thus, the normativity in bioethics is intercalated
in creation and disseminates of knowledge about human values, but not
limited to a legal discourse only.
BIG THINGS COST MORE
1,2
3
Miriam I. Siebzehner , Ella Koren
1
Ministry of Health, Israel
2
Gertner Institute for Epidemiology and Health Policy Research, Israel
3
Ziva Tal Academic Nursing School, Sheba Medical Center, Israel
[email protected]
Breast augmentation is generally performed on request by women
desiring to enhance nature’s endowments. This elective procedure is not
considered essential for promoting or maintaining health but is defined as
a "cosmetic procedure" per-se.
In Israel, the market for breast implants is diverse and uncontrolled.
Mostly, these procedures are performed in private clinics. Even though
women sign a consent form, they are usually unaware of the kind of
implant installed and possible complications.
In recent years, reports have been published, firstly regarding the quality
of the implants and later on, their leakage. These incidents were
perceived as a threat to women's health. In 2012, a turmoil erupted in
Israel regarding the Poly Implant Prosthesis (PIP) implants. The Israeli
Ministry of Health (MoH) asked the population with PIP implants to
contact the MoH, giving details of the procedure conducted. The MoH
also announced that the surgical extraction of the implants will be
financed by public funding.
This led to controversy among the women affected, the MoH and the
general public raising doubts regarding the moral justification of the MoH
decision:
Abstracts of Oral Presentations
1. With limited public resources available is it right/just/fair/
correct/reasonable to allocate resources for treatments that are not
considered necessary instead of allocating them for "life-saving"
treatments?
2. What is the moral responsibility of the government for these personal
cosmetic decisions?
3. What are the boundaries of personal/public responsibility?
Ethical approaches: deontology, utilitarianism and moral luck may assist
in enlightening the rights and duties of the patient and of the MoH.
PROTECTION OF HUMAN SUBJECTS: INTRODUCING THE
RESEARCH PARTICIPANT AND FAMILY ADVOCATE (RPFA)
Tomas Jose Silber, Children’s National Medical Center,
George Washington University, USA
[email protected]
The aim is to introduce the research subject advocate as the 5th level of
protection, describing the role and tasks of the Research Participant and
Family Advocate, illustrating it with some vignettes.
Level 1: this is the researcher informed by the various codes of ethics.
Level 2: is the Ethics Committee / IRB as an independent body reviewing
the proposed research.
Level 3: are the jurisdiction and government’s regulations of research set
the context (and limits) of what an IRB can approve.
Level 4: is the process of informed consent.
Level 5: is the contribution of the Research Subject Advocate (RSA), aka
Research Participant and Family Advocate. Thus the protection of human
subjects is based on a three legged stool: 1) The ethical considerations of
the researcher. 2) The approval by the IRB that interprets the regulations.
3) The process of informed consent. The appearance of the fourth leg in
the stool is the new role of Research Subject Advocate: it adds a personal
dimension, that allows for a professional independent from the research
team to assist the participant. Areas of input for the Research Participant
and Family Advocate include being an Ombudsman, membership in the
IRB and DSMB, assist researchers with the ethics of their protocol, assure
that the language in the informed consent is clear and understandable,
witness randomly the process of informed consent, specially with high risk
research, educate research associates about research ethics, e.g. the
“therapeutic misconception”.
Research subject advocacy is a contribution developed in the 21st century
that deserves to be more widely known: the incorporation of Research
Participant and Family Advocacy Programs into the research enterprise
should be considered by research directors and adopted by academic
institutions.
MEDIA ETHICS – PRINCIPLES AND PRACTICES IN
MACEDONIAN JOURNALISM
Liljana Siljanovska, South East European University, Republic of Macedonia
[email protected]
In the era of democratization of the institutions in all spheres of social
living and the ever greater globalization imposed by the fast technicaltechnological development and modern communication the issue of
media ethics is problemized more and more and is connected with moral
responsibility of journalist and the application of professional standards
and criteria. In the Republic of Macedonia, the behavior of the media and
the codes of conduct of professionals have always been written and
imposed by somebody else: the government, the state, the ruling political
parties or the media closely connected to them. Respecting professional
standards and criteria, especially in research journalism, often times are
reflected in media practice with certain difficulties for journalists,
administrative obstacles, bans and legal persecutions. With the new
domestic media laws, the elementary human right to be professionally
informed is limited and repressed, thus completely affirming as a new,
fabricated and artificially construed right without any basis from the
relevant international legislation.
Journalistic ethics must firstly call upon the public for whom the news are
intended, for the good of those who at the end will benefit from the
reports and whose lives could be deeply affected by the content of the
news – be it good or bad. The ethic code of journalists and other media
professionals is only the second name for the rules of the game which the
journalistic profession is based on. Those rules make sense only if they
147
arise from a broader social context which characterizes the acceptance of
a certain system of universal values.
USE OF THE SCREENING TOOL IN ITALY
Simona Silvestro, Accoglienza & Integrazione, Italy
[email protected]
The study of prevalence of SLCN in young offenders in the Italian context
was developed in 5 steps: definition of targets, presentation of the project
to the educational centers, use of the screening tool, analysis of the
results. The team compared SLCN assessment of 35 young people aged
15-19 who have offended and living in residential accommodation in the
Lombardy region against a group of 26 young people at different
mainstream secondary schools in Rome, using a translated and culturally
adapted version of the UK screening tool. Ethical implications had to be
discussed. The training of key-workers on SLCN was highly valued.
CONTENT OF SYLLABI OF “PUBLIC HEALTH ETHICS”
COURSES IN ACCREDITED U.S. PROGRAMS AND SCHOOLS
OF PUBLIC HEALTH
Pablo Simón-Lorda1, Inés-María Barrio-Cantalejo2,
María-Isabel Tamayo-Velázquez1
1
Andalusian School of Public Health, Spain
2
Primary Health Care Center “Almanjayar”, Spain
[email protected], [email protected],
[email protected]
Background and Objectives: In 2002, the US Institute of Medicine (IOM)
issued the Report “Who Will Keep the Public Healthy”. Training in Public
Health Ethics (PHE) was pointed out as a major priority to be incorporated
by US Schools (S) and Programs (P) of Public Health (PH). This study
analyzes if this objective has been fulfilled and the content of the Syllabi
of the courses delivered.
Methods: In November – December 2012, we requested information
about postgraduate courses on PHE to the 48 PH S and 86 PH P accredited
in 2012 in US. The database of the “Epidemiology and Public Health Ethics
Syllabi Project” of the University of Miami was also consulted. We
developed a checklist of topics. The Syllabi were analyzed with this
checklist.
Results: We got information from 25 S (52%) and 36 P (42%). 7 S and 21 P
did not offered specific PHE Courses. We gathered 36 Syllabi. We
detected and included in the checklist 75 different topics. 38 topics were
addressed in 6 or more Syllabi. These topics could be gathered around 10
main areas: 1) Foundations of PHE; 2) Autonomy and its limits; 3)
Infectious Disease Control; 4) Justice and Health; 5) Research Ethics; 6)
Health Education and Promotion: Lifestyles and Addictions; 7)
Environmental and Occupational Health; 8) Screening; 9) Genetics and;
10) Confidentiality
Conclusions: Not all the US S and P are offering specific courses on PHE.
The delivered Courses show a great variability of content. If the 10 main
areas were considered as the minimum, then many of the US PHE Courses
should be reviewed. Including emerging new issues in PH and a more
practical approach is also necessary.
AGEING AT THE BEGINNING OF THE 21ST CENTURY:
LONGEVITY, AGEISM, STEM CELLS RESEARCH AND ACTIVE
AGEING
Frida Simonstein, Ariela Lowenstein, Israel
[email protected]
th
Life expectancy has almost doubled since the beginning of the 20
century in developed countries. More people than ever survive now to
their eighties and even to their nineties; the number of centenarians has
st
also been growing. Certainly, prolonged longevity in the 21 century is the
outcome of better hygiene, vaccines, antibiotics and sophisticated surgery
th
all of which were developed during the 20 century. Undoubtedly this
was a remarkable triumph of Science, Medicine and Public Health.
Paradoxically, however, while prolonged longevity is generally applauded
by society, ageing is not. Ageing is regarded as, and many times is, a frail
and debilitating condition; which demands a huge allocation of resources;
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UNESCO Chair in Bioethics 9th World Conference
these could (claim the critics) be better spent on young people. It has also
been claimed that 'old people have a duty to die'; and that 'old people
refuse to die'.
This paper explores prolonged longevity, its value and its discontents; the
paper examines the future of ageing from the perspective of stem cell
research. And observes that at present, active ageing may postpone
and/or avoid many of the conditions which, prolonged longevity is usually
plagued with.
development and use of biomarkers in occupational and environmental
health has greatly increased. However, many scientific and ethical issues
still remain unresolved. In this paper the current most critical ethical
issues raised by the practice of MB will be discussed, taking into account
the four principles of Biomedical Ethics (autonomy, not maleficence,
beneficence, and equity). It is the authors’ intent to mainly discuss the
literature on those ethical issues which are more often ignored or little
considered in the practice of occupational medicine by the OMP, also
envisaging possible solutions.
INFORMED CONSENT IN CLINICAL STUDIES ON
COGNITIVELY IMPAIRED PERSONS:
AN ETHICAL DILEMMA IN RESEARCH
ATTITUDES OF LITHUANIAN TEACHERS GIVE NOTICE
ABOUT A BAN OF ABORTIONS
Gary Sinoff, Carmel Medical Center, Israel
[email protected], [email protected]
Grita Skujienė, Jurga Turčinavičienė, Vilnius University, Lithuania
[email protected]; [email protected]
With the world’s population aging, there is a parallel increase in the
number of demented and it is vital to study this phenomenon to
understand possible factors predicting general decline in the demented
elderly.
However, before any research is undertaken, it is necessary to obtain
approval from the Ethics Review Board, who is responsible for acceptable
national and international ethical standards. The basis for recruitment is
the signature on the informed consent form where the patient is required
to understand the study's purpose, internalize the study’s aim, to consider
all options and finally to express an opinion. In the case were the subject
is incapable, some countries, including Israel, require that there has to be
legal guardianship, which is a long and complicated process that causes
researchers not to recruit demented patients into a study which may be
of major benefit for them. Signing informed consent forms has probably
become the major issue being grappled with by clinicians throughout the
world who are involved in dementia research.
Some countries will allow proxy signing of informed consent forms
permitting the demented elderly subject to participate in the study. Often
the threshold may depend on the invasiveness of the intervention. This
problem of proxies signing on informed consent form, troubles
researchers worldwide. This issue was raised with international
researchers and is presented in this paper relating to the historical
perspective of ethics in research as well.
Lithuania's parliament took a first step towards banning abortions in May
of 2013, voting for a bill that would prevent terminations except in case of
rape, incest or health complications. How such decision could emerge
from the perspectives of bioethical attitudes of teachers?
During the implementation of the European FP6-STREP project called
“Bio-head Citizen’’ (No. CIT2-CT2004-506015) the questionnaire was
developed for 6 groups of respondents dividing them into two separate
sets (i.e. currently employed and prospective teachers) according to the
following subjects: Lithuanian (native) language, elementary education
and biology. Exactly 21 questions were developed in relation to bioethical
considerations coherent with 1) cloning and twins; 2) equality of gender;
3) abortion; 4) equality of an ethnic and biological groups. There were 316
questionnaires received back of the total respondents’ pool from the
various Lithuanian secondary schools, Vilnius Pedagogical University and
Vilnius University.
Results: 1. Lithuanian teachers were not well trained in decision-making
process and had too little notion about importance of bioethical decisionmaking. 2. The majority of answers indicated good biological knowledge
which confronted with prejudice attitude towards human equality and
rights. 3. Even 29,1% responding teachers totally agreed that abortion is
never acceptable in any case. 4. There was observed divergence in
opinion towards abortion choice: a) among currently employed and
prospective teachers; b) among 0-30, 31-40 and 41-75 years old age
groups.
FROM BIOETHICS TO NEUROETHICS
Elisabetta Sirgiovanni, Institute for International Legal Studies (ISGI)
National Research Council (CNR), Italy
THE DEAD TEACHING THE LIVING, VON HAGENS BODY
WORLDS – ART, ENTERTAINMENT, EDUCATION OR A
VIOLATION OF HUMAN DIGNITY?
She introduces the Neuroethics concept starting to the book “E tutta
colpa del cervello? (Is it a brain fault?) which the researcher has written
with Prof. Gilberto Corbellini.
Magda Slabbert, University of South Africa, South Africa
[email protected]
ETHICAL ISSUES IN THE BIOLOGICAL MONITORING OF THE
WORKERS
F. Sito, L. Licciardi, M.C. Mauriello, M. Manno, Università degli studi di
Napoli “Federico II”, Italy
[email protected]
Biological monitoring (BM) is the systematic and periodic measurement of
one or more biological markers in excreta, secreta, biological tissues,
expired air or any combination of these matrices, compared with
appropriate reference values or ranges, for determining qualitatively and
quantitatively the exposure, effect or susceptibility of the workers to toxic
agents. BM, by a purely chronological order, starts with the planning of
the study and the identification of the study subjects, including the
collection of their Informed Consent, if any. Then follow the collection
and storage of the samples, the analysis in the laboratory, the evaluation,
interpretation, and management of the data, as well as the
communication of the individual and collective results to the workers
involved, and other similar commitments. Therefore, in the execution of a
MB programme, the occupational medicine professionals (OMP) will
encounter numerous ethical issues. Not always, though, the Code of
Ethics of the International Commission on Occupational Health (ICOH,
2002) provides adequate recommendations of detailed practices to be
adopted. Besides, in recent decades the scientific production on the
Curiosity is most probably the main reason for the success of Gunther von
Hagens Body Worlds: the original exhibition of real human bodies. This
first public anatomical exhibition of human corpses that have been
plastinated has attracted millions of visitors in the last ten years. The
plastination process involves replacing the water and fat of the body with
certain plastics that can be touched, has no smell or decay and even
preserves most of the original sample. Body Worlds was first exhibited in
Tokyo in 1995, since then the exhibition has been hosted by more than 50
museums and venues and recently in South Africa. The Body Worlds
exhibition takes its visitor through a journey of more than 200 specimens
including 20 full body plastinates as well as individual organs (displaying
the difference between healthy lungs and lungs affected by cancer). The
various full body plastinates are posed in different positions to display
how the human body works, they vary from the chess player with his
brain split open to display the brain “in action”, the runner with his
muscles falling off the bones to display the working of the muscles and
the controversial pregnant women with her womb cut open to show her
eight month old fetus. Von Hagens himself believes his exhibition has
educational value, referring to it as “the democratization of anatomy:
anatomy for the masses as opposed to anatomy for the academic elite”.
Many others describe it as art and it has also attracted the definition of
“edutainment”.
The legal process in South Africa when donating a whole body will be
analysed and the question will be asked whether a person should have
the right to donate his or her body for such an exhibition taking
cognizance of the right to self determination and personal autonomy. It
Abstracts of Oral Presentations
will further be argued that the plastination process of whole skinless
bodies and the exhibition of these bodies is not a violation of human
dignity, neither for the dead not for the living. Such an exhibition should
not be viewed as contra bones mores but each individual should choose to
go and see the exhibition or refrain from it according to their personal
value system.
WHEN LESS IS MORE: RAISING AND CHALLENGING
EXPECTATIONS AROUND INDIGENOUS RESEARCH
CONSULTATION IN NEW ZEALAND
Barry Poata Smith, Lakes District Health Board, New Zealand
[email protected]
Using opportunities provided by a three year grant from the Royal Society
of New Zealand Marsden Fund, the author’s research goals are to
examine ethical oversight in Australia, Canada and New Zealand by
comparing approaches to ethics evaluation in research where indigenous
populations are involved and, also, analysing how tensions play out when
non-indigenous researchers attempt to engage with indigenous peoples
and communities. As a starting point, this presentation confines itself to
the New Zealand context using data collected in (ethically approved)
interviews with Maori members of ethics committees (IRBs) as well as
those who advise non-indigenous researchers on the way to
‘appropriately’ engage with Maori. This material is augmented by field
notes taken while observing the way ethics committee reach decisions to
see just how both Maori and non-Maori members deal with these
tensions while, at the same time, inquiring about their experience of, and
their aspirations for, Maori consultation within the ethics review process.
The focus is on identifying what issues are deemed important enough to
be consulted about demarcating between matters of ‘culture’ and issues
to do with the research question or answering of specific query, “how will
this research affect Maori”? Throughout this analysis, use is made of the
Canadian demarcation when examining whether expectations regarding
what constitutes consultation alter when non-indigenous researchers
study Maori communities or issues highly relevant to Maori (such as
diabetes) as opposed to research that targets the general population. This
research finds that, while Maori may have been empowered to be
consulted under the principles of Treaty of Waitangi (1840), what
constitutes meaningful consultation seems never to have been properly
delineated or enforced resulting in the undermining and trivialisation of
the process. In order to avoid this devaluation it is suggested that, in
terms of ethics review, less may indeed be more which leads to the
proposition that robust engagement with Maori should be required when
research is focused on issues of import to Maori rather than in every case
as happens now.
INFORMATION ON RISK GENES FOR BREAST CANCER
IN A POPULATION, TO INFORM OR NOT TO INFORM
INDIVIDUALS AT RISK
1
2
Jon Snaedal , Vilhjalmur Arnason
Landspitali University Hospital, Iceland
2
University of Iceland, Iceland
[email protected]
1
Scientists responsible for the Cancer registry in Iceland have studied a risk
gene for breast and ovarian cancer; the Icelandic variant of the BRCA gen.
Individuals with this gene carry a lifetime risk of 70% for cancer. Women
diagnosed with breast cancer and their close relatives were invited for
genetic analysis. Those carrying the risk gene were invited for careful
genetic counseling and to attend follow up every 6 months. Some of these
women have chosen to have their breasts removed in order to minimize
their risk. In all, 174 women have been participating in this project.
Iceland has a population of 320.000 individuals. DeCode Genetics, a
genetic research laboratory based in Reykjavik has for years studied the
genetics of the population through various scientific projects. Scientists of
the laboratory have recently informed that it is technically feasible to
analyse all individuals of the country for the aberrant BRCA gene. This is
possible through three channels available to the company; whole genome
analysis of more than 2000 individuals, imputation of this information into
genetic information of more than 100.000 individuals and subsequently
through the genealogical database of the whole population. It has been
149
calculated that the number of affected individuals in the country is 2.400,
half of them women.
Return of information was not mentioned in the consent obtained from
those participating in the various genetic projects of DeCode.
The question now discussed among scientists, ethicists and the general
population is whether the company should be allowed to reveal this
information to the individuals concerned.
BIOETHICS AND FILMS: A MODERN GREEK THEATER
1
2
Jan Helge Solbakk , Juan Jorge Michel Fariña
1
University of Oslo, Norway
2
Universidad de Buenos Aires, Argentina
[email protected], [email protected]
The second choral ode of Sophocles´Antigone is one of the most profound
and fascinating pages of universal literature. It demonstrates the
extraordinary synthesis of the double mediation system (instrumental and
normative) that moulds the moral condition of the human species. In this
context, the Mendelssohn and Orff versions of the chorus taken together
are not a mere “musicalization” of the text, but a true aestheticconceptual creation that supplement it. In George Steiner´s words: “a
setting to music by Mendelssohn or Orff, a radically penetrative staging
(…) are, inevitably, metamorphic acts of interpretation. They are often as
illuminating as any but the rarest of philological-critical gloses”. This paper
proposes an analytical reading which allows us to view Sophocles’
Antigone from two angles. On the one hand it recreates the atmosphere
of Greek tragedy, which is closer to the staging of an opera than to the
reading experience in vogue today. On the other hand, it introduces
tension between the three registers of Jacques Lacan (the Imaginary, the
Symbolic and the Real), to generate the proposal of a new line of analysis
of the musicalized versions of the Greek choruses, which are absent in the
canonical texts on the matter.
THE DARK SIDE OF THE DIGITAL DIVIDE
Lisa Somma, Fabbrica dell’Immaginario, Italy
The constant increase of information flow is turning into a kind of “digital
epos”, a collective storytelling whose characters are digital identities that
each exports to the internet.
In this scenario, the role of media education becomes strategic because
allows the elaboration and the formulation of an own technological
language, which is essential both for expressing individuality than
diversity.
ETHICAL BEHAVIOR IN TEMPORAL PERSPECTIVE:
ETHICAL MIRAGE PHENOMENON IN APPLIED ETHICS
Daniela Sotirova, Technical University – Sofia, Bulgaria
[email protected]
Academic study, critical analysis and interpretation of a new concept in
organizational and behavioral research, named ethical mirage are
proposed in this article. The notion is seen in perspective of applied
ethics. It gives an opportunity to understand some less explored aspects
of business conduct and communication. The analysis of ethical behavior
is based on seeing it in a three dimensional time perspective. Connection
between temporality and ethicality of behavior and judgments is a basic
principle for this analysis. From the perspective of time trihotomy the so
called "bounded ethicality" is considered and the phenomenon of ethical
fading is studied as an explanatory mechanism for incommensurability
between ethical judgments in the process of predicting, acting and
reconstructing behavior as well. The approach proposed in this article
could be useful in organizational, management, and consulting practices.
It is argued that new approaches and subject areas in applied ethics
should be included promptly in bioethics and medical ethics teaching at
medical schools. The reasons for that are at least twofold: first, the
complexity of problems to solve in medical practice and health
management, secondly, the need to overcome the false impression about
applied ethics as frozen canon of abstract concepts.
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UNESCO Chair in Bioethics 9th World Conference
THE U.S. CONSTITUTION AND BIOETHICS:
MUTUAL ILLUMINATIONS
Roy G. Spece, University of Arizona, USA
[email protected]
The Constitution and Bioethics are mutually illuminating. This is partly
because the constitution is the repository of our basic American values
(shared to some degree in various parts of the world) and is part of the
nation's distinctive but complex and multiple identities which are
challenged by bioethics. The illumination, moreover, is a two way deal:
one does not just explain and unpack bioethics from a constitutional
perspective in order to understand it and bring it within our basic law.
One can also seek to be enlightened about the constitution itself, which
becomes sorely tested under the pressures of technological changes that
do not fit well into our existing frameworks of thought. This has already
happened on many occasions, and the courts – and the nation – will be
increasingly called upon to apply the constitution not only to the existing
cracks in our legal walls but to cracks and walls and open
spaces we never imagined. Put otherwise, as technology arrives, settles
in, and draws in still more innovation, technology and the constitution are
in a bidirectional relationship: the basic law, which we must implement,
illuminates technological issues and helps anchor them – but the
constitutional anchor itself is in a feedback relationship with technology,
even if the ultimate values of liberty, justice, fairness, equality, and "the
general welfare" remain intact at the highest levels of generality. Other
levels of generality that accommodate analysis are accepted forms of
constitutional interpretation (text, etc.) and well-developed constitutional
standards of review (such as rational basis, intermediate, and strict
scrutiny).
PHYSICIAN FINANCIAL AND ORGANIZATIONAL INTERESTS:
THE REVISED LEGAL DOCTRINE OF INFORMED CONSENT
AND BIOETHICS
Daniel Sperling, Hebrew University of Jerusalem, Israel
[email protected]
With the increased realization that healthcare is delivered in a complex
system changing over time and the prominence of managed care
organizations in some places starting in the mid-1970s in the US, or the
rise of privatization of health services in others eg Israel, the legal
discussion of informed consent is starting to change. While previously,
discussion of informed consent was made in the context of a dyadic
relationship between physician and patient funded by silent partners,
enormous number of players in complex relationships came into play and
shaped the understanding of the requirement of informed consent. In my
presentation, I will present recent case law and legislation both in Israel
and the US that provide various examples to the attempts to limit the
scope and extent of the doctrine of informed consent in light of these
changes. Specifically, I will focus on limiting or otherwise narrowing the
duty to disclose of information to the patient due to organizational
factors such as in Israel, or refusing to acknowledge a duty to disclose the
financial interests of physicians that may be at the cost of care, like in the
US. I will then argue that the ethical and philosophical literature is
showing very little interest in these important changes and will go to
explain why I believe this is so. This will be followed by a critique – or
rather, an insight to – the bioethical literature.
NOT A DEAD GIVE AWAY: HUMAN REMAINS AND THE
RESEARCHER’S RESPONSIBILITIES
M. Spigelman1,2, Yael Stein, P. Honeyman1,3
1
Hadassah Medical School, Hebrew University, Israel
2
Royal Free Campus, University College London, UK
3
School of Public Health, Sydney University
[email protected], [email protected]
With the advent of modern scientific methods human remains both
ancient and historical have become the subject of increasing interest in
medical research. As researches seek evolution and origin of diseases by
looking at the DNA of various bacteria and host resistance genes, also
genes of diseases to see if there are any evolutionary trends or
environmental stimuli that may have led to selection of genes that once
were beneficial but are now detrimental. As well many scientists are
looking at genes to try and establish evidence of race down to almost
tribal differences amongst people.
This has raised a number of ethical problems that have not yet been fully
acknowledged:
1. The actual treatment of human remains-these are not objects they are
people and from historical times will have living known descendants.
Should there be a universal reburial protocol? What constitutes
human remains? Does DNA amplified by PCR remain part of the donor
and as such requires reburial.
2. Religious and cultural considerations: The Jewish Orthodox religion
prohibits disturbing human remains except for Pikuah Nefesh (if it
helps others), the Buddhists have ancestor worship, the Australian
aboriginal have their particular set of values.
3. Use of DNA for ethnic and racial profiling this may be a frightening
development the Nazis used forms of Pseudo science to prove
ethnicity. How much more dangerous would this have been had they
unearth an ancient Jewish cemetery and found no matter how wrong
a Jewish, or Romany Gene would the Turkish Genocide of Armenians
been made even more horrific had their scientists found an Armenian
gene. There is now an accepted Cohen gene that appears to date back
to antiquity- could the presence of such a gene have been enough
proof to cause a persons to be condemned to death? Yet the gene is
also present with significant frequency amongst a tribe of Bantus in
South Africa.
We have for over 20 years been studying DNA looking for the evolution of
bacteria especially TB and Hansen’s disease and more recently host
resistance/susceptibility genes and certain cancer susceptibility genes in a
variety of human remains from the 18th Cent Hungarian mummies from
Vac, 5th cent A D from Sudan as the Jaseon dynasty from Korea.
This paper will discuss how our finding may be relevant to today’s medical
ethics and how one overcomes cultural and religious problems one can
face in such research.
ROLE OF GUIDELINES IN DENTISTRY AND TREATMENT OF
CHILD: THE TRAUMATOLOGY OF THE CHILD – FROM THE
EVENT TO FOLLOW UP
Enrico Spinas1, Pietro di Michle
1
University of Cagliari, Italy
[email protected]
This work highlights the need to submit, over time, all dental-facial
injuries reported in the pediatric age, in a careful and constant
monitoring. Even the traumas occurred in deciduous dentition, often
overlooked, need adequate and consistent follow-up to detect, prevent
and treat the onset of serious events in the subsequent permanent
dentition.
Only the correct application of the protocols and treatment guidelines can
ensure an appropriate control range regarding these debilitating oral
diseases.
PATHOLOGY IN THE PARENTAL RELATIONSHIP: THE GOOD
PRAXIS FOR EVALUATION OF PARENTAL CAPABILITIES
Elisa Spizzichino, Italy
[email protected]
Often, in situations of conflict separation, in the interest of the minor Ill.
Judge decides mo for custody of the child to Social Services, even up to a
placement of the child at the family home. However not always the
parents who have a limitation of parental authority or suspension of the
same have a personality profile of clinical relevance, such as to affect
parenting skills. More often we are faced with the pathology of the report
of the parental couple who obviously has an impact on children.
Unfortunately, more and more often we are faced with devices of credit
to the Social Services and or removals of children from their home
because of the inability of the parents to communicate or even to make it
impossible for the child to have access to one of the two parents.
The project will propose a reflection on when the custody to the Social
Service and or the removal is actually in the interest of the child, and if so,
what are the "best practices" for the evaluation of parenting skills.
Abstracts of Oral Presentations
PHYSICIAN-PATIENT COMMUNICATION DURING THE
ENDOVASCULAR AND PERCUTANEOUS THERAPEUTIC
PROCEDURES: SOME PERSONAL CONSIDERATIONS BASED
ON A PERSONAL EXPERIENCE IN AN INTERVENTIONAL
RADIOLOGY-NEURORADIOLOGY CLINICAL CONTEXT
Altin Stafa, Maggiore Hospital, Italy
[email protected]
During the last decades, the evolution of the medicine and the new
technologies has made possible the treatment of a growing number of
pathologies through percutaneous or endovascular procedures. These
procedures are generally considered less invasive than the classic surgical
approach because of the lack of tissues’ dissection, which makes possible
their implementation in awake patients, i.e. without general anesthesia.
Physician-Patient direct communication during these procedures is
generally based on the necessity of the operators to ensure the patient’s
cooperation and compliance. It could be also generated
by the patient's curiosity to know in real time what is going on with
him/her. In any case the patient can also attend the operators’ technical
communications concerning the ongoing procedure.
In these conditions there might be a special need to pay close attention to
the quality of the communication, in all these situations.
In any case, an empathic approach considering the psychological and
cultural background of the single patient, should be suitable.
The Physician-Patient communication could not be considered concluded
and completed within the informed consent. In some clinical settings, doe
to the technical peculiarities and specific operation modalities, the
communication with the patient during the therapeutic procedure, could
have an important role.
The quality of such a communication should be considered an important
element of the personal and team ethical professional behavior; it would
also help to strengthen and enhance the therapeutic alliance with the
patient and to avoid some possible disagreements that can sometimes
lead to medico-legal implications or disputes.
A WOMAN PORTRAIT BASED ON THE CODE OF LEKË
DUKAGJINI, THE MEDIEVAL ALBANIAN CUSTOMARY LAW:
A PROFANE POINT OF VIEW
1
2
2
Altin Stafa , Rosa Maria Gaudio , Francesco Maria Avato
1
Maggiore Hospital, Italy
2
Ferrara University, Italy
[email protected]; [email protected]
The role of women in patriarchal societies has always been characterized
by a low-profile participation in the social life and essentially limited to
the function of mother-wife-housekeeper. Even if this has been a
widespread social model in those societies, applied depending on the
local cultural background, only in very few cases, this model has been
formalized by specific and well-articulated social rules. One of these few
cases is certainly represented by the Code (Kanun) of Lekë Dukagjini, the
medieval Albanian customary law.
It is attributed to the medieval Albanian prince Leke (Aleksandër)
Dukagjini and it has been passed down orally by the fifteenth century on.
It has been transcribed only in the early twentieth century for scientific
purposes.
The Kanun is a very articulated set of rules that has served to structure
and define interpersonal, familiar and social relationships for several
centuries in the Balkans Albanian speaking area (i.e. Albania, Kosovo,
western Macedonia and part of Montenegro).
The peculiarity of the role of women that emerges from this code is
ambivalent: on the one hand it reveals a woman-object as a sort of
commodity exchange, on the other side it describes the woman able to
behave as a full social substitute of the Man in some specific situations
and able to ensure the bio-social the survival of the clan (as in the case of
"the sworn virgins").
The author provides an overview of the portrait of the woman as it
emerges from a fast reading of the Kanun of Lekë Dukagjini.
151
ETHICAL ANALYSIS OF THE SCIENTIFIC RESEARCH ON
ANIMALS: THE PRACTICE OF THE RESEARCH ETHICS
COMMITTEE IN THE MEDICAL UNIVERSITY OF SOFIA
Ivaylo Staykov, Vihren Petkov, Any Miteva, Medical University of Sofia,
Bulgaria
[email protected]
The study aims to analyze the ethical problems in justifying research on
animals. From this perspective, the practice of the Research Ethics
Committee in the Medical University of Sofia is discussed. A review of the
national and international tools used to safeguard the animals in research
is accomplished in accordance with the scientific, human and ethical
principles. The ethical analysis is grounded on operative and detailed
regulations for performing the research on animals. National legislation,
guidelines for the care and use of animals in research, including a grading
of research techniques, pain and distress are discussed. Documents and
information developed in the research or the project needed to be
estimated by the Ethics Committee when submitting them for
examination and expert analyses as well as the ethical expert assessment
card are presented.
It is argued that the research ethics committees are important and that
they possess the animal rights and human morality. It is claimed that the
interdisciplinary committee and the examinations of the ethics of animal
research, based on a sound scientific methodology are to advance
significantly in the biomedical enterprise.
PROFESSIONAL DIGNITY IN NURSING IMPLICATES
PATIENT SAFETY FOR ITALIAN NURSES
1
2
1
3
Alessandro Stievano , Dyanne Affonso , Gennaro Rocco , Laura Sabatino ,
3
Rosaria Alvaro
1
Centre of Excellence for Nursing Scholarship Ipasvi, Italy
2
University of Hawaii, USA
3
Tor Vergata University, Italy
[email protected]
Dignity as a conceptual domain of nursing ethics related to patient safety
is not well known to Italian nurses. Although exploration of dignity in
patient care has been studied in nursing research, the dignity of nursing
professionals in their interactions with other health professionals and its
impact on patient care has not been explored. A qualitative study was
conducted to describe nurses’ perceptions of professional dignity in
clinical practice in Italy. A total of 72 registered nurses participated in
eleven focus groups conducted in 2 public hospitals, 3 university teaching
hospitals, 2 private hospitals, 1 palliative care center and 3 nursing
educational facilities. Data analysis consisted of content analysis to
identify codes, categories and themes. Rigorous qualitative research
procedures were used: a) Dependability established through coding, subcategorising and categorising. B) Credibility was established by four
independent assistants who had an interceding reliability. Two themes
emerged as findings: (i) nursing professional dignity perceived as critical to
patient safety and dignity as a concept that goes beyond the working
roles. These two conceptual themes underpin patient safety relative to
team-work, organizational structures based on quality international
standards, competence through education and lifelong learning. In
addition, values were cited as a common strand of patient safety
pertaining to respect, moral integrity, humility, kindness and
accountability in the dignity of nurses.
PATIENT RIGHTS IN MENTAL-HEALTH CARE FACILITIES:
AN EMPIRICAL STUDY OF THE PHENOMENON
Rael D. Strous, Beer Yaakov Mental Health Center; Sackler Faculty of
Medicine, Tel Aviv University, Israel
[email protected]
The competence and excellence of any system should be judged
according to the extent to which it cares for its weakest. In health care
management, it is critically important that the weakest, namely those
with mental illness, are always afforded the most ethical and professional
care with regards to respect from staff, sensitivity, empathic regard and
consideration for patient rights. Patient rights need to be respected both
in and out the hospital milieu despite patient judgment and behavior
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UNESCO Chair in Bioethics 9th World Conference
often being impaired to a considerable extent when illness is severe and
when the patient requires chronic hospitalization. Furthermore, not only
in life, but also in death, patients have rights. Thus while organ donation
for transplantation and research after death should be encouraged, it is
still critical that patient rights regarding patient consent be respected. In
this presentation, we will discuss two under explored areas regarding
patient rights in the field of psychiatry – patients' rights on the psychiatry
wards and patients' rights after death regarding organ donation for
transplantation and for research. Results from several empirical research
studies will be examined within the context of the discussion. It is
suggested that awareness of the importance of patient rights on the
psychiatry ward will ensure greater attention to the phenomenon in
terms of staff support, education and oversight.
GIVING THEM THEIR VOICES BACK: A MEDIA PROJECT
OFFERS A FLOOR FOR THE VULNERABLE
Ralf Stutzki1, Stella Reiter-Theil1, Markus Weber2
1
University of Basel, Switzerland
2
Kantonsspital St. Gallen, Switzerland
[email protected]
DU bist Radio (DBR, YOU are Radio) is an award winning monthly radio
format that goes on air on three Swiss radio stations. The purpose of this
program which was first broadcast in 2009 is the development of a new
media format which – without applying any journalistic (or other) filter
and influence – conveys authenticity of expression amongst society's
most vulnerable fellow citizens such as patients, clients and the socially
deprived. So-called marginal groups are encouraged to speak for
themselves, as a possible paradigm case for encouraging the inclusion of
patients’ and relatives’ “unfiltered” voices in general and in clinical ethics
as well. Before handing over the microphone to the groups in focus, a
team of journalists, educated in medical ethics, over a period of 4 days,
teaches them on-site radio skills and craft. Once this task is completed
and the actual production of the broadcast begins, the media crew does
not exert any influence whatsoever on the content of the one-hour
program. Thus, the final product is solely created and accounted for by
the media-inexperienced participants, leading to unforeseen and often
surprising results. It is discussed that the DBR approach of fostering
authenticity of expression can serve as an enhancement to today’s
respect- and autonomy oriented field of medical ethics.
A CHALLENGING FUTURE FOR ETHICAL DECISION-MAKING
IN PSYCHIATRY
Magdaleen Swanepoel, University of South Africa, School of Law, South
Africa
[email protected]
Different concepts of health and normality, different evaluations of the
role of psychiatrists and medicine, and different conceptions of social
ordering have prevailed at one time or another. The fundamental basis of
medicine (in this context psychiatry), its being a secular formulation of
suffering, pain, and illness and of the means of their alleviation, has
remained invariant throughout the centuries. Making ethical or moral
decisions, like any other decision in health care, is not a precise art but a
learned skill. What decision is ultimately made and how that decision is
made has always been the topic of intense debate. In making ethical
decisions three important factors need to be taken into account: First,
psychiatrists always have choices they can select from as they make
decisions. Second, in making these decisions the consequences of these
choices have to be taken into account. Lastly, the context or setting of the
ethical dilemma will affect the decision to be made and this must be
taken into account as well. In no other field, however, the positivistic
distinction between fact and value has been more ambiguous and more
difficult to sustain. Although psychiatrists would like to believe that
ethical issues encountered in their practices can be viewed in black and
white - they mostly come in shades of gray. That is why the practice of
psychiatry requires an on-going examination and discussion of both longstanding and evolving practical issues as well as the ethical, legal and
professional resources on which it relies to guide its professional conduct.
Bioethicists can tease out the philosophical notions of healthcare values
and preferences, while psychiatrists can tease out the clinical and
pharmacologic variables. These issues will be discussed in the
presentation with emphasis on ethical decision making in psychiatry.
THE PSYCHIATRIST'S ROLE IN THE DILEMMAS ARISING
FROM THE RELATIONSHIP BETWEEN EUTHANASIA AND
DEPRESSION PARTICULARLY IN HOLOCAUST SURVIVORS
Marnina Swartz-Vanetik, Ilona Mirecki, Yoram Barak, Yehuda Baruch,
Abarbanel Mental Health Center, Israel
[email protected]
Many patients seeking euthanasia meet DSM IV criteria for major
depressive disorder. An essential question psychiatrists are facing is
whether and to what extent the depression influences their patients'
euthanasia requests. This issue is further complicated when facing
euthanasia wishes of aging Holocaust survivors. One should consider the
effects that societal values, norms and religious beliefs have on this
dilemma amongst the survivors.
The psychiatrist should know what the patient’s wish was prior to the
onset of depression. In oncology or ALS patients must state their wish well
in advance to dying.
As to the diagnosis of a Major Depressive Disorder, one has to evaluate
the severity of the current episode during which euthanasia is requested,
since it would be expected that the severity would have a significant
impact on such a wish.
Another issue the psychiatrist should address is whether all the
treatments available were used for both diseases: The one that the
patient is suffering from and wants to terminate and the second is the
depression (assuming that there has to be some extent of depression for
considering euthanasia). The psychiatrist should be familiar with the fact
that there are numerous treatment strategies, and that a patient that
does not respond to one treatment, might respond to another.
Beyond Major Depression and its relationship to euthanasia, one must
remember that the patient and the therapist might share the same
dilemma, but do not necessarily share the same inner values.
DO CAREGIVERS HAVE THE RIGHT TO REFUSE TREATING
TERRORISTS?
N. Tabak1, I. Margalith2
1
School for Health Professions, Tel Aviv University, Israel
2
Dina Academic School of Nursing, Rabin Medical Center, Israel
[email protected]; [email protected]
Terrorism has become a common phenomenon worldwide, which
unfortunately we have become accustomed to.
Health caregivers provide professional treatment to wounded terrorists
who have survived their own action. In some cases these terrorists are
hospitalized on the same wards as the innocent victims. The literature
reveals that nurses, who were assigned to treat terrorists, reported a
reluctance to do so, as the terrorists were considered "the enemy". The
nurses claimed that they were fearful and stressed and that given the
option, they would not be involved in the treatment. Nursing students
reported they would treat terror victims and terrorists alike, but they
would prefer to hand the treatment of a terrorist over to a colleague.
This presentation addresses the appropriateness of the dilemma raised by
health caregivers as to their right to refuse to treat terrorists vs. the
obligation to provide equal treatment to all.
BIOETHICAL ISSUES AT THE BEGINNING OF LIFE AND
FEMALE CITIZENSHIP
Emilia Taglialatela, University Federico II Naples, Italy
[email protected]
The inquiry on the status of human embryo is the central point of so many
ethical, political and legal questions, that are interconnected about the
problem of “generation”. In this question, first of all the opportunities for
women's freedom are involved and, consequently, the possibilities given
to them to be included inside the uncertain area of rights and citizenship.
In particular, women's thought has been interested in the discussion
about hard bioethical present problems, such as the voluntary
interruption of pregnancy or the assisted fertilization.
Abstracts of Oral Presentations
This paper is going to underline the contribution given by the notion of
“gender” to a different idea of experiences linked to the control of our
body and its generative power.
The birth of a new subjectivity, based on the value of a moral autonomy
and equal freedom, has caused a lot of theoric and normative conflicts
due to a debate about the meaning of the human embryo's life and a new
idea of motherhood no longer linked to a fatal biological destiny but
connected to a real determined choice. This paper is going to examine the
most meaningful steps of the ethical and bioethical debate characterizing
this transition, putting into evidence all the ambiguities and problems
that, still nowadays, affect the idea of “habeas corpus” for women.
MEDICAL ETHICS AND ISLAM
Rizwan Taj, Unit Head, Pakistan
[email protected]
Medicine has progressed over centuries in terms of clinical practice and
research. This has been the result of endless efforts and investig