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1) Ethical and conceptual issues
Current research and research results
It is increasingly recognized that within many areas (e.g., disability and handicap), conceptual
issues and ethical issues about proper conduct and underlying values are highly intergrated.
The treatment of ethical and policy issues depends on the content of the concepts employed
and, at the same time, many central concepts are informed by moral opinions and, as a result,
contested on ethical grounds. Taking this intergration of conceptual and ethical issues
seriously from a research point of view requires that they are very strongly interconnected, i.e.
mere studies of the way in which concepts are in fact informed by moral opinions and social
values is not siffucient. Outright normative analyses of underlying ethical views need to
underpin suggestions with regard to the way in which central concepts should be employed in
policy contexts.
This has been recognised in research on the basic ethical issue of what should be seen as the
basic determinant of the quality of life or well-being (Brülde 1998, 2006), as well as research
on applied ethics of relevance for disability (Brülde 2003; Munthe 1996, 1999; Juth 2005;
Juth & Munthe 2006), and concepts such as happiness, health, illness, and mental disorder
(Brülde 2000, 2006a, 2006b).
Research on several of the conceptual issues has demonstrated how they are strongly
connected to ethical problems related to health care policies and public health practices, in
particular issues about what are the appropriate goals of medicine as a whole, or parts thereof,
e.g. the goals of palliative care, psychotherapy, rehabilitation, or treatments of chronic
illnesses. Normative theories about appropriate goals are necessary to come up with plausible
grounds for diagnostic categories, outcome measures and policy guidelines in different areas.
Some attempts at formulating such theories have also been undertaken (Brülde 2000, 2001;
Juth 2005, Munthe 1996, 1999)
Strongly interconnected with the issue about goals are outright ethical issues about proper
conduct and policy in a number of areas that specifically concern the disabled. Examples of
general problems of this nature are when (if ever) coercive measures are morally justified, and
how (according to what principles) limited resources should be distributed (Brülde 2003, Juth
2005, Juth & Munthe 2006). Other problems of more specific interest regard medical
practices such as abortion, assisted reproductive technologies (ART), prenatal diagnosis
(PND) and genetic testing.
Within a string of projects, these latter issues have been investigated in multidisciplinary
settings involving empirical studies and social science aspects, besides regular philosophical
analysis, concepts and theories. An initial study on the moral history of PND analysed the
evaluative goals and normative convictions expressed by this practice (Munthe 1996), while a
second study subjected the development of PND in the ART-context (so-called
preimplantation genetic diagnosis) to a forward-looking, in-depth investigation of the moral
and political aspects of the practice of choosing children on genetic grounds (Munthe 1999).
Currently running is a project on genetic counselling and testing involving philosophers,
theologians, geneticists, medical doctors, nurses and psychologists, where studies of ethical
issues are combined with empirical surveys about the experiences of health care
professionals, patients and educators, in order to reach a better understanding of the role of
genetic medicine in society and to produce recommendations about this expanding field. A
recent outcome is a ph.d. thesis (Juth 2005) dealing with underlying issues about values and
norms implied by the wide literature on the ethics of genetic testing, and an analysis of the
ethics of medical screening (Juth & Munthe 2006) connecting the field of genetic testing to
general issues in public health.
Ethical issues of public health and health policy are actualised in all of the studies, not least
the ones about the goals of medicine and health care mentioned above. Such issues are
additionally explored in particular in the EuroPHEN project, which involves researchers from
12 European countries, Canada and the U.S, undertaking empirical research, and ethical
analyses regarding the concept of health, medical screening, and the goals of health policy,
among other things. Besides this, our team have access to a broad international network of
researchers in bioethics, the philosophy of medicine and social care, as well as relevant
empirical disciplines. Of particular interest are: Lennart Nordenfelt (Linköping U.) and
Jerome Wakefield (NYU), both world-leading researchers in the area of the concepts of
health, disease, disability, disorder, dysfunction etc; William Ruddick (NYU), Wayne Sumner
(U. of Toronto), Torbjörn Tännsjö (Stockholm U.) are all renowned experts on several of the
underlying normative ethical issues; Angus Dawson (Keele U.), John Harris (U. of
Manchester), Julian Savulesco (Oxford U.) and Stephen Wilkinson (Keele U.) are leading
bioethicists who have all made important contributions to discussions in this field with strong
connection to disability issues.
Besides the ones listed below, there are a number of additional publications communicating
our studies, as well as numerous presentations that have been made at national as well as
international scientific meetings. Members of the team are all active as referees or editors for
various journals, as well as regurlarly acting as expert-examiners on ph.d.-theses and grantapplications. In addition, the totality of our activities has had several spin-off effects in the
form of invitations from and actual dialogues or collaborations with, as well as commissions
from, disability researchers, disability organisations and social services responsible for
habilitation and support for disabled people, as well as professional organisations and public
authorities dealing with such activities.
Brülde, B 1998, The Human Good, Göteborg: Acta Universitatis Gothoburgensis.
– 2000, ”On How to Define the Concept of Health: A Loose Comparative Approach”,
Medicine, Health Care and Philosophy 3: 305-308.
– 2001, ”The Goals of Medicine: Towards a Unified Theory”, Health Care Analysis 9: 1-13.
– 2003, ”Hur ska vi få en rättvisare fördelning av hälso- och sjukvårdens resurser?”
Socialmedicinsk tidskrift, nr 5, 2003.
– 2006a, ” Happiness Theories of the Good Life”, Journal of Happiness Studies, in press.
– 2006b, ”Mental Disorder and Values”, Philosophy, Psychiatry and Psychology, in press.
Juth N 2005, Genetic Information: Values and Rights, Göteborg: Acta Universitatis
Gothoburgensis.
Juth N & Munthe C 2006, “Screening: Ethical Aspects”, in Ashcroft R, Dawson A, Draper H
& McMillan J 2006 (eds.), Principles of Health Care Ethics, 2nd Edition, Chichester: John
Wiley & Sons.
Munthe C 1996b, The Moral Roots of Prenatal Diagnosis. Ethical Aspects of the Early
Introduction and Presentation of Prenatal Diagnosis in Sweden, Studies in Research Ethics
No. 7, Göteborg: Centre for Research Ethics.
– 1999a, Pure Selection. The Ethics of Preimplantation Genetic Diagnosis and Choosing
Children without Abortion, Göteborg 1999: Acta Universitatis Gothoburgensis.
Ethical and conceptual issues
Planned research
Just as in the case of the concepts mentioned above, the question of how handicap and
disability is and should be conceptualised, and what conditions that in effect are and should be
seen as disabling, must be analysed in a context where policies of social security and support
make use of the resulting concepts, where medical interventions of different types are
typically seen as appropriate if a condition is classified as a disability, and where applied
classifications communicate underlying values and norms within society. Connecting to this,
there are controversial ethical issues about when the classification of a condition as disabling
is defensible, the appropriate societal response to disability, and what medical interventions
are acceptable. Criteria of disability such as ICF are unsatisfactory, since they are void of any
recognition of such aspects. At the same time, the idea pursued within so-called disability
studies that the root of the problems faced by the disabled is their very classification as
disabled seems to be a mere assumption that oversimplifies things in the opposite direction.
It needs, thus, to be clarified how ethical and social aspects interplay with the conceptual
demarcations of disability and how they should so interplay. It is our plan to employ
methodologies developed and results produced in our past and current research to this general
area. More specifically, we want:
To conduct surveys of some specific ethics and policy issues actualised by both the increased
possibility of classifying disabling conditions in genetic and/or biochemical terms, and the
accompanying trend of classifying more behavioural, physical and psychological conditions
as disabling. This will be done by analysing debates with regard to especially controversial
cases, such as hearing impairments, behavioural conditions such as ADHD, mental retardation
and infertility. All of these cases also actualise controversial interventions, such as cochlear
implants, the use of narcotics as pharmaceuticals, prenatal diagnosis or PGD.
To develop a terminology which can help us discuss the ethics and policy issues of area no. 1
in a fruitful way, while at the same time allowing practically useful demarcations and
measurements to be used in policy as well as social and medical practice. Key targets are
concepts like functioning, ability, inability, disability, impairment, activity, bodily and mental
function and dysfunction, and bodily and mental structure.
To develop a normative ethical theory of the appropriate goals of social policy and practice in
response to disability, for example, different kinds of habilitation and rehabilitation. Such
theories need to address the issues of area no. 1, but also to suggest solid and plausible
outcome measures, i.e. to determine how different treatments and other interventions are best
assessed, and thus will have to make use of the findings of area no. 2. In addition, the theory
needs to be related to the underlying issue of what moral duties there are towards disabled
people, e.g. to what kinds of societal support these people are entitled.
To apply and analyse central debates in medical ethics and bioethics on controversial medical
procedures (such as prenatal diagnosis and genetic testing) which are applicable to all
conditions for which genetic or biochemical diagnostic criteria are formulated. This
undertaking will, of course, be connected to areas no. 1, 2 & 3. Of special interest are those
conditions where the symptoms that make them seem pathological to medical specialists may
be either attacked by other means than biomedical ones (such as adapted pedagogy, life-style
or social setting) or being described as being (partly) caused by social factors.
To analyse and critically assess the underlying assumptions and problems implied by the
strong trend within disability theory to view the category of disability (as well as more
specific diagnostic categories within this field) as socially constructed concepts which tend to
reinforce existing structures of prejudices and devaluating social attitudes towards certain
kinds of people. In particular, we want to address the ethical conflict between the needs of
individuals arising within such socio-cultural settings (such as the desire for access to prenatal
diagnosis due to the burdens of having disabled children), and the political aim of resisting
any expression of such settings (with the hope of eventually having it overthrown).
The theme of ethics and policy aspects of disability connects to several other projects in
which members of our team are involved: Besides the ones already mentioned these are:
Working ability (a multidisciplinary project led by Lotta Vahlne-Westerhäll, where
conceptual and ethical issues similar to the ones described above are addressed), Valueladeness (where general problems related to the understanding and use of value-laden notions
such as the ones that will be addressed in area no. 2 will be investigated from linguistic and
philosophical points of view), GEN-GENUS (where gender and queer theory, structurally
very similar to popular themes in disability studies, will be applied to ethics and policy
discussions about novel and forthcoming techniques in reproductive medicine). In parallel,
our methodologies will also mean that we develop contacts with various acting and concerned
parties, such as relevant policy bodies, disability organisations and practitioners within
(re)habilitation and social care.
The international collaborations will be further developed, in particular since the EuroPHEN
project will be further expanded and we will there have the opportunity to further emphasise
the disability aspect of public health, and we will aim at creating a fruitful dialogue with
leading theorists within disability studies.
We need to recruit one post doc researcher, as well as a couple of ph.d.-students.