The New Genetics and Disability Rights
Presentation to EU Conference, “Human Genetic Testing, What Implications”
Brussels, May 6, 2004
By Bill Albert, Chair of Bioethics Committee DPI Europe
The new genetics has resulted in and will lead to important medical advances, but this is only one part of the story. In my five minute slot I want to focus on another part of the story, one which I think is as, if not more important.
Despite the fact that the sequencing of the human genome has demonstrated our molecular commonality, its more saleable message has been about individual uniqueness and individual choice. Besides fitting in so well with the ruling ethos of our consumer society, what makes the genetics project appear even more desirable is that the choices promised have been coupled invariably with improved health. A winning and most saleable combination.
So why are disabled people, at least the disabled people who I represent in the disability movement in Europe, not won over. Why instead are we so concerned about the impact of new genetics on our human rights? There is the little issue of our recent history. Although we would not equate new genetics with the Nazi atrocities against disabled people, we can still hear the echoes and feel the icy touch of eugenic elimination in this latest, ostensibly softer, market driven phase.
It also must be remembered that throughout the world, even in those countries with anti-discrimination legislation and where social provision is comprehensive, albeit rarely adequate, disabled people remain an extremely disadvantaged minority. Disability is stigmatised and disabled people are still routinely discriminated against in education, employment, transport, access to all kinds of social and cultural activities as well as health care. We remain the poorest of the poor, in every country in the world. For example, in the UK the majority of disabled people live near or below the poverty line. And in many countries disabled people find their basic human rights, often their right to life itself, violated as a matter of course. In many countries so called “mercy killing” of disabled people goes either unpunished or lightly punished, with the murderer often being given a sympathetic press. Two points follow from this.
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As is recognized in other parts of the EU, disability is overwhelmingly an issue of systematic discrimination and social exclusion. Disability is a human rights issue. While sometimes giving a passing nod in this direction, the new human genetic discourse frames disability very powerfully as a medical issue.
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This popular genetic discourse and state support of testing and screening, PGD, selective termination/elimination and the wider perceived demand for “normality” adds another powerfully sinister layer of social prejudice to a group which is already socially disadvantaged and excluded.
Let me give you a couple of examples of what I mean with respect to the current eugenic discourse. One of the main boosters of the genetic project has touted it by saying:
“Soon it will be a sin for parents to have a child which carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."(1)
This is Dr. Bob Edwards, who with Patrick Steptoe, was the pioneer of IVF treatment in Britain, speaking at an international conference. He went on to welcome the beginning of a new age when “every child would be wanted and genetically acceptable.”
More recently, James Watson, made a similar observation. “I strongly favour controlling our children's genetic destinies. Working intelligently and wisely to see that good genes dominate as many lives as possible is the truly moral way for us to proceed.” (2)
Why do calls for this new form of ‘population improvement’, this new form of eugenics, seem to be so readily accepted or at least not condemned out of hand for what they are?
Well, aren’t we all consumers now? And when we make choices, what do we as consumers want? Products which are not defective, at the very least. So, what is happening now and is likely to become more prevalent as the genetic project becomes stronger and more pervasive is that medical conditions will increasingly be equated with the prospective child. All the many other things which make us who we are will be ignored, lost in these genetically targeted medical conditions. A Downs child, a cystic fibrosis child, a spinabifida child, a deaf child – not a son or daughter, not a brother or sister, not a friend or lover, not a joy to the world or a pain in the ass, all of those rich possibilities too come, sliced away by a cruel genetic logic which leads to such a convenient, socially efficient equation.
Rather more prosaically, remember what one of the first question is when you’ve heard a friend or relative has had a baby. “And, how’s the baby.” Too simple? Clearly too simple, but the easy and understandable acceptance of such a loaded question, offers one key to understanding the deep-seated, profound social assumptions about disability. If you think you are immune to such assumptions, then think again. It is the continuing power of these assumptions which allows society to hold at the same time the apparently contradictory views that disabled people should be granted full human and civil rights while at the same time leading to the embrace of a social discourse and clinical genetic structures which mouths individual choice while promoting genetic cleansing.
The popular concept of geneticisation allied to big business and floating on the ethical solvent of individual choice or autonomy has begun to stigmatise and through this threatens to reduce the genuine social acceptance of human genetic diversity. There is a strong tendency in the human genetics project to restrict incrementally the idea of what human life can be. By doing so it will make those of us who are left all the poorer.
No one, least of all a disabled person, should have to defend the right to life of disabled people. No one should have to live that life in a society which values them so little it makes a social and medical virtue out of eliminating people who might be like them.
Variety is not the spice of life. It is life. In the disability movement we believe passionately that rather than promoting genetic search and destroy strategies there is an inherent value in extending our sense of what a human life can be.
(1) Sunday Times, July 4, 1999.
(2) The Independent, April 16, 2001
2005-05-20 00:00:00
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