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The New Genetics

by Bill Albert

The new genetics has resulted in and will lead to important medical advances, but this is only one part of the story. 

While the sequencing of the human genome has demonstrated our molecular commonality, its more saleable message has been about individual uniqueness and choice. The fact that the choices promised have been coupled invariably with improved health makes this a winning and most saleable combination.

So why are disabled people not won over? Why instead are we so concerned about the impact of the new genetics on our human rights? There is the issue of our recent history. Although we would not equate the new genetics with the Nazi atrocities against disabled people, we can still hear the echoes of eugenic elimination in this latest, ostensibly softer, market-driven phase.

It must be remembered that, even in those countries with antidiscrimination legislation, disability is stigmatized, 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. And in many countries disabled people find their basic human rights, often their right to life itself, violated as a matter of course. Two points follow from this:

Disability is an issue of systematic discrimination and social exclusion; a human rights issue. In contrast, the new human genetic discourse frames disability very powerfully as a medical issue. 

This popular genetic discourse and state support of testing and screening and selective termination adds another layer of prejudice to a group which is already socially disadvantaged and excluded.

An example of the current eugenic discourse: a pioneer of IVF treatment, speaking at an international conference, welcomed the beginning of a new age when every child would be "genetically acceptable." "Soon it will be a sin," this researcher declared, "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."

Why do calls for this new form of "population improvement" seem to be so readily accepted?

Well, aren't we all consumers now? And what do we as consumers want? Products which are not defective, at the very least. It is likely that medical conditions will increasingly be equated with the prospective child. All the many things which make us who we are will be lost in genetically targeted medical conditions. A Downs child, a cystic fibrosis child, a deaf child--not a son or daughter, not a friend or lover, not a joy to the world or a pain in the ass--all of those rich possibilities to come, sliced away by a cruel genetic logic which leads to a convenient, socially efficient equation. 

Rather more prosaically, remember what one of the first questions is when you've heard a friend has had a baby. "And, how's the baby?" Too simple? Clearly, but the easy acceptance of such a loaded question offers one key to understanding the deep-seated, profound social assumptions about disability. 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 embracing a social discourse which mouths individual choice while promoting genetic cleansing.

No one should have to defend the right to life of disabled people. No one should have to live that life in a society that makes a 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.

Adapted from a presentation to an EU conference on human genetic testing, Brussels, May 6, 2004. Bill Albert is Chair of the Bioethics Committee of DPI Europe.

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