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The Rights Design and Institution Arrangement
of Genetic Testing Technology
――with Analysis on Legalization of Chinese Bioethics
in Bioethics Globalization
Panelist：JIAO, Hongtao; LUO, Min
Institute of Science and Technology Law, Law School,
Huazhong University of Science and Technology,
China
Introduction
Only understanding applied science is
insufficient by itself. Care for people itself ,
ought to be main goal that all technologies
struggle all the time.
――Einstein
Catalogue
Ⅰ
Ⅱ
Ⅲ
Ⅳ
Ⅴ
Ⅵ
Ⅶ
Ⅷ
Ⅸ
A Brief Introduction to Genetic Testing Technology
The Value-Laden and Moral Reflection upon Genetic
Testing Technology
The Ethical Norms of Genetic Testing Technology
The Ethics and Laws of Genetic Testing Technology
The Ethical Legalization of Genetic Testing Technology
The International Trend of Genetic Testing Technology
Ethical Legalization
The Ethical Legalization of Genetic Testing Technology in
China
The Problems Brought by Life Sciences Technology
Revolution in China
The Solvent of Problems: the Practical Reason of Law
Ⅰ
A Brief Introduction to
Genetic Testing Technology
Genetic testing technology is defined as “the test to
discover the existence, lack and change process of some
specific gene or chromosome, including the indirect test of
gene products or other specific metabolites which can
display the variation of some gene.
――In Clause 12, Article 2 of
The International Declaration on Human Genetic Data
Pluralistic genetic testing is one of the most important
tools of genetic medical science in the 21st century, which is
promoting the reinvigoration and rebirth of medical
diagnosis, and it will play a decisive role in individualized
medical treatment.
Ⅱ The Value-Laden and Moral Reflection
upon Genetic Testing Technology
As a biotechnology, genetic testing technology should be
also laden with values. Now that technology is not neutral in
value but laden with value, we can no longer consider
technology just as a tool, but should give it a further moral
reflection.
The chaos of social order may be caused by genetic testing
technology :
•
•
•
•
The Mental Serenity of Human cannot be Guaranteed
Common Ethics will be Violated
Individual Dignity will be Contemned
Follow with Genetic Discrimination
Ⅲ The Ethical Norms of
Genetic Testing Technology
•
•
The Necessity of Ethical Norms
The Ethical Institution of Genetic Testing
Technology
Ⅳ The Ethics and Laws of
Genetic Testing Technology
•
•
Ethics and Laws are Mutually Related
Ethics and Law Can’t be Divided from
Each Other
Ⅴ The Ethical Legalization of
Genetic Testing Technology
•
The Ethics of Genetic Testing Technology
――Bioethics
Principles of Biomedical Ethics written by
Tom L. Beauchamp and James F. Childress
four fundamental principles of bioethics:
autonomy
beneficence
non-maleficence
justice
•
•
Bioethics and Human Rights
The Legalization of Bioethics
Ⅵ The International Trend of Genetic Testing Technology
Ethical Legalization
The Rights Design and Institution Arrangement of Genetic Testing Technology
Base of
bio-ethics
Three elements
of right
Autonomy and beneficence
Regulations of international documents
Subject
Accord with HUGO Ethics Committee: Statement on the
Principled Conduct of Genetic Research, Section 2 Article 8 of
The International Declaration on Human Genetic Data and
Section3 Article 6 of Universe Declaration on Bioethical
Norms: the subject of right to informed consent can be at the
individual level, family level and community level. Based on
individual’s informed consent, act for consenting is allowed.
Object
Accord with Article 1 of The International Declaration on
Human Genetic Data: the object of right to informed consent
include the action collect, dispose, use and save human genetic
information, human protein group information and pick-up the
biology sample from which such information is obtained.
Right to informed
consent of genes
Contents
Includes right to informed beforehand, right to consent,
right to decide whether to know research result or not, right to
withdraw consent, right to inquire genes and right to request
for compensation.
Base of
bioethics
Three
elements of right
Subject
Right to
genetic
privacy
Object
Contents
Beneficence
Regulations of international documents
Accord with article 6 of The Universal Declaration on the Human
Genome and Human rights, Section 1, Article 14 of The International
Declaration on Human Genetic Data and Article 9 of Universe
Declaration on Bioethical Norms：the subjects of right to genetic
privacy include: testee, consanguine relatives and other relevant groups.
Accord with Article 14 of The International Declaration on Human
Genetic Data：the objects of right to genetic privacy include: the
individual privacy that take part in using genetic information, human
protein group information and biologic sample research, recognizable
human genetic information of individuals, families and relevant groups,
the secrecy of biologic sample.
Article 14 of The International Declaration on Human Genetic Data
and Article 9 of Universe Declaration on Bioethical Norms regulated
the contents of right to genetic privacy. Article 9 of The Universal
Declaration on the Human Genome and Human rights and Section 2,
Article 14 of The International Declaration on Human Genetic Data
regulated the exceptional circumstance of right to genetic privacy.
Article 8 of The Universal Declaration on the Human Genome and
Human rights regulated right to request compensation of trespassing
genetic privacy.
Ⅶ The Ethical Legalization of Genetic
Testing Technology in China
•
•
•
Chinese Government
National Research Institutions
The Present Situation of Legislation in
China
Ⅷ The Problems Brought by Life
Sciences Technology Revolution in China
⑴ The Contradiction between Industrial Chain Globalization of
Biological industries and the Interests of China
⑵ The Contradiction between Unification of Bioethics Views and
Cultural Diversity
⑶ The Contradiction between Unity and Diversity of
Fundamental Human Rights
⑷ The Contradiction between Human Rights and Scientific
Research Freedom
⑸ The Contradiction between Localization and Globalization of
Laws
⑹ The Contradiction between a Good Developing Prospect of
Biological Industries and Lagged Effect of Bioethics and Laws
Ⅸ The Solvent of Problems:
the Practical Reason of Law
•
•
The Interpretation of Legal Practical Reason
The Solvent of Bioethics Problem
(1)
Strengthen the Independent R.N.D. Capacity of Biological
Industries
Unveil and Cross-examine the Hidden Factors of Ethics and
Value
Establish a New Social Ethics and Value System
Legalize Bioethics Norms
Introduce a Flexible Ethics Restriction Institution
(2)
(3)
(4)
(5)
Conclusion
Without morality, even animals lack the
means to live on. But nowadays, human
beings don’t know should what morality to
abide by.
――Robert Musil
Our Aim
Realize the terminal goodness of
human beings
――benefit human beings
and their living environment