In: Seminar on Bioethics and Disabled People, 1998.
The Chair thanked the speakers for agreeing to be on the panel at such short notice and explained that, as the final speaker
was unable to be present, the session would be used for an open discussion on some of the issues raised during the day.
Issues Arising from the Discussion
Pressure is being brought to bear on individuals and families to have tests, with little information on why they should have them and how to deal with the outcomes.
The range of tests being offered is pursued by people in whose commercial interests it is to offer the test, therefore there is an argument that strength of public opinion can create a shift in attitudes towards what test are acceptable. An example of this was with gender testing where the information was being widely misused to abort female fetuses.
At present there is only rhetoric of choice. Women choosing to continue pregnancy where impairments is present are seen as socially irresponsible, as are woman who refuse to have pre-natal tests.
A woman's freedom of choice should be upheld but pressure is brought to bear to terminate without adequate discussion or support.
Ground has been lost in the last fifteen years, in that parents now probably have a lot less confidence in the health and social welfare system to potentially support their disabled child. There is a lot at stake in trying to claim that parents should be making pre-natal decisions in the context of a society where they have no confidence in its commitment to provide high standards of care and support.
Freedom of choice
A woman must have the right to decide on her pregnancy but does this give the right to selective abortion?
If we use the example of a disabled woman wanting to have a disabled child, just as non-disabled parents may wish to have a non-disabled child, the question is how do we deal with this wish in practice? Do we use selective technology to realise our wishes? This is where discrimination starts.
There is a clear violation of the right to found a family where the notion exists that disabled women should not have children at all. We want the freedom of choice to live our lives the way we want to live them.
Freedom of choice can be infringed for the mother when the technology exists to determine whether a future child will have a certain impairment or disease resulting in limits to her employment or insurance prospects. Such cases have already gone to court in the U.S.A. and Germany.
Free choice in the free market does not always produce social good and in some circumstances there is a social interest in restricting individual choice where it has negative impact elsewhere - this is particularly true in environmental questions. But the notion of individual autonomy is becoming the "sacred cow" of medical ethics. There is a need to balance the autonomy of people (including disabled people) to make their own life choices and the effect those choices have on other people's freedom and right to life.
We need to argue there is a broader social interest in preventing market forces acting freely which could lead to the current eugenics we fear - there has to be some kind of regulation of that free market in genetics.
A problem with using a genetic approach is that it focuses on individuals and looks for individual solutions. Broader, collective solutions get overlooked (for example, in heart diseases, environmental factors may be as important as individual predisposition). Emphasis on the individual also overlooks the wider social implications of reproductive decisions.
Such an individualistic view also reinforces the medical model of disability, and the 'healthy', 'unhealthy' distinctions used by the medical professionals.
Eugenics is about saying that certain people are not acceptable - that their life is not worth living.
In the United States of America, a form of political conspiracy can be perceived which is fighting to change the role of government in society as guarantor of the rights and empowerment of the members of that society. They want to achieve the 'free market society' where it is survival of the fittest and what is revered is power. This also applies to bioethics.
There is no organised eugenic conspiracy as such but if enough people share the same education, clubs and values, they would not need to conspire with each other - it would just happen organically. (Justin Dart referring to Susan George's theory on Third World Debt).
We are caught between eugenic policies in terms of birth and death. It is going on in the form of genetic changes, screening and euthanasia.
Describing screening programs in terms of their cost effectiveness through the number of impaired fetuses aborted is clearly eugenic. This is not the same as saying all people working in genetic science hold eugenic values.
In Germany, the term is being used - 'everyday eugenic behavior'. At the same time as we are being given more freedom to make reproductive choices, so the philosophy is shifting of who belongs to the human species or not and people are being eugenicist without even realising it or realising what the values are.
Disabled people will be told their concerns are misplaced and that we live in liberal democracies that are not eugenic. Therefore, we need to change the debate to focus on individual human rights and challenge the arguments around autonomy, freedom and individual choice.
Quality of life
Ordinary people find this a high complex issue to understand. Influences can be brought to bear and inappropriate decisions are made. Discussions and decisions about quality of life go beyond issues of impairment to questions of stigma and discrimination. Health care (including new genetics) is driven by quality of life issues.
There is a frightening link between abortion and euthanasia. Once you've agreed that a baby with a certain impairment has no quality of life and can be aborted, then you have presumably also agreed that if a person acquires that impairment at a later point in life, then they also have no quality of life and that they can be subjected to all types of violations such as involuntary euthanasia?
In discussion with philosophers (in Germany) when most of the disabled people in the room said "I find my life OK as it is, I want to live the way I am" the philosophers' response was, "That's very nice that you think the way you do, that you overcame your disabilities in this way, but objectively you are wrong".
Discussions about quality of life could be a diversion...the wider issue is to do with the value of life.
Value of life
On one level, equating the quality of life in relation with how much something costs is about whether a particular treatment should be funded or not. But when you get down to individual treatment decisions, it is a frightening concept in terms of the value of a life when medics frequently refer to 'lives not worth living'.
Usefulness of genetic research
Some genetic research may have positive benefits. We need genetic explanations for some problems. People want to know. For example, the knowledge of a genetic predisposition to cancer (or not) has given helpful information to some families. But we need to be concentrating on when this work is being misused.
Access to information on genetic research
In the UK, the Wellcome Foundation funds research within the Human Genome Project (HGP). One sixth of the HGP is in Cambridge, England. Its findings are not secret, they are sent out via the Internet. The Wellcome Trust has also been initiating public debate in this area.
Influencing genetic research
At present, several bodies in the UK play a role in regulating genetic research. Disabled people's organisations are not represented on these bodies.
Control by commercial interests is framing the debate. In the U.S.A., ethical problems go before a committee of people with a commercial interest in bio-technology before decisions are made to fund.
The science of genetics must be controlled by those who believe in justice, otherwise injustices will be perpetrated.
Genetic Interest Group
At the moment disabled people are represented on this subject by the Genetic Interest Group who are on several advisory commissions and medical ethics committees, but the Group is not democratic and they are not accountable.
The Galton Institute
This is a UK society with annual seminars on eugenics where writers and advocates discuss their concerns on eugenicist policies.
Revolution of Empowerment
"We are never going to fylly achieve any of our goals, such as being protected against the barbaric use of genetics, unless we lead a revolution of empowerment".
"A revolution that eliminates the barbaric stereotypes from our systems and culture, and in which we create a culture where all people have, are empowered to have, their inalienable rights to exercise their inalienable responsibilities to govern themselves, to govern their society, and to produce lives of quality...and I mean all people".
"We have a long way to go as we are not considered fully part of the human species an are perceived as a tragic, expensive minority". (Justin Dart)
If people are to have genuine free choice, it has to be in a context where people are confident that society is willing to share burdens and support people whose needs are greater than others, in order for them to achieve the same quality of life as other individuals.
This is what the disability movement has been working towards in the context of civil rights issues, but not previously in the area of genetics as we have been unaware of the fundamental issues and have been excluded from the debate.
The seminar has given us a clear expose of what the issues are, and helped us to understand the arguments and who is involved in the debate. We have also been given a clear picture of what tools to use in our arguments onthe human rights front. Now, as a disability movement, we have to plan how to move forward. We have a profoundly influential movement which has promoted civil rights and developed systems to empower disabled people. We must continue to build the movement and fight in this human rights debate, to make this an issue within the movement and show that the violation of our rights by genetics and eugenics chips away at our equality.
List of participants
Dr. Angus Clarke,
Dept. of Medical Genetics,
University Hospital of Wales, UK
Dr. Sarah Cunningham-Burley
Senior Lecturer in Medical Sociology
Dept. of Public Health Sciences
University of Edinburgh, UK
Human Rights Lawyer/DPI Human
Rights Task Force
University of Frankfurt, Germany
Lecturer, Disability Studies, Disability
Research Unit, University of Leeds, UK
DPI-EUROPE - Human Rights Task Force
Norwegian Federation of
Disabled People, Norway
Richard Wood (BCODP)
British Council of Disabled People, UK
The Threshold Association, Finland
Chair, DPI Europe
BCODP International Committee, UK
Jo Smith (LCDP)
Leicestershire Coalition of Disabled People
Norwich Access Group
Robert Droy, (SCIL)
Southampton Centre of Independent Living
West of Scotland Forum on Disability
Lewisham Association of Disabled People
Helen Caplan (GMCDP)
Greater Manchester Coalition of Disabled People
Natalia Hill, Secretariat
Human Genetics Advisory Commission, UK
GenEthics News, UK
Justice for All, USA
BCODP/Chair, European Network
of Independent Living (ENIL)
The Wellcome Centre for Medical Science
The Wellcome Trust
Frances Hasler, BCODP
DPI Europe Staff