The New Genetics and Disabled People

by Dr. Bill Albert,
Chair of the Norfolk Coalition of Disabled People
and the International Sub Committee of
the British Council of Disabled People, 1998

The following paper draws heavily on the British Council of Organisations of Disabled People's (BCODP) discussions on the issue of genetics and disabled people. Please note that this paper is NOT BCODP policy but rather a discussion document intended to encourage debate within the movement. For more information on the issue of genetics and disabled people BCODP please refer to the BCODP web site.

I

Clinical genetics and genetic research have given rise to an ethical minefield. However, disabled people offer a unique perspective on the issues which may help everyone chart a safer way through. This is because we know the real territory which genetics assumes as its own - the quality of our lives. In this territory we are the "native guides", although unlike indigenous guides before us we have been largely ignored by the new explorers, except as objects for elimination. Unfortunately, in this last respect European colonists and contemporary geneticists share a common purpose.

But, we do not want to be eliminated and we do not want people who might be like us to be eliminated. Our lives have a value equal to anyone's. While our impairments may cause us pain or inconvenience, few human beings go through life without pain or inconvenience. What really disables us is a society which does not recognise our right to equal treatment and, increasingly, our right to exist at all.

One key reason for this is that disability, popularly seen as a kind of living death, is identified as a medical problem. In turn this has allowed the new genetics to enter, stage right or stage left, brashly proclaiming its promise of a medical solution. This is very much in line with trends in medicine generally which have narrowed the focus onto the pathology of disease and away from considerations of the broader social experience of illness. Prenatal genetic testing can be seen as the logical extension of this process - the simplistic equation of disability with genetic "abnormality."

However, most people with genetic impairments can lead lives that are fully worth living. Furthermore, the vast majority of disabled people are not born with their impairment but acquire it through accident or illness, although there may be a genetic predisposition to some late-onset conditions. Therefore, even if the threatening promise of a final genetic solution was delivered, disabled people will still be around. Instead of trying to eradicate human diversity, society will simply have to adjust to it.

It is ironic that just now, when that adjustment is beginning to be made with official recognition of disabling discrimination (the UK's Disability Discrimination Act, the US's Americans with Disability Act and similar legislation in other countries), we seem to be on the verge of a new, more subtle eugenic offensive which publicly speaks the liberating language of improved health while privately maintaining the more sinister ideal of "improving the human race."

II

Despite its unsavoury heritage, the eugenics ideal survives. It has changed its costume, but the song is still the same. Class or race, at least for all but the most extreme, is no longer at issue. The biological quality of human populations has now become the target, as advances in genetic engineering seem to hold out the prospect of moving us all closer to Francis Galton's (the 19th century father of eugenics) ideal of being "good in birth."

But genetics is not in the least eugenic, say its proponents. For example, Hughes writes, "While the biological factors in most forms of inequality are probably slight, genetic technology does promise to create a more equal society in a very basic way: by eliminating congenital sources of illness and disability that create the most intractable forms of inequality in society" Isn't it desirable, he asks, to rid humanity of disease and impairments? Do we want our children born with muscular dystrophy or cystic fibrosis? If these and other conditions can be prevented with the help of clinical genetic intervention what could possibly be the problem?

The problem, besides the facts that gene therapy remains a distant prospect, and that rarely is there a one-to-one relationship between "genetic abnormality" and illness, is that prenatal genetic testing leads not to the elimination of an impairment but more often then not to the elimination of a "suspect" foetus. While women should have free reproductive choice, with respect to impairment that choice is anything but free. It is heavily circumscribed by cultural, social and economic pressures and these work powerfully against a woman choosing to continue with a pregnancy after "an abnormality" has been detected. The British abortion laws enshrine this prejudice by not allowing termination after 24 weeks unless a likely problem has been discovered.

While it would be wrong to label a woman's individual choice as eugenic, such choice is informed by considerations of what an acceptable quality of life is. At the level of society these are often nakedly eugenic considerations. For example, having a child with Down's Syndrome is strongly discouraged, despite the fact that such a child is perfectly capable of enjoying a good quality of life.

In this way it can be argued that prenatal, or even post-natal, genetic testing, can not only lead to eugenically informed terminations but that such testing also fosters a climate of intolerance against disabled people. Commenting on this point, a disabled women, responding to a recent BCODP discussion paper on disability and genetics has written:

"I feel that it (testing) gives the ordinary person (my neighbour, my friends and family, the nurses and other medical professionals who may care for me) the impression that I, as a genetically disabled woman, have a duty to abort an 'abnormal' foetus. I challenge this. If others see it as my duty to abort a child of mine simply because it is like me, surely according to their logic, I have no right to live either. "

Although most geneticists would maintain that their work was not informed by such eugenic ideas, David King argues that not only are the histories of genetics and eugenics inseparable, but that there are also powerful eugenic assumptions underpinning current genetic research and clinical practice. He quotes a study carried out in 1994-1995 by Dorothy Wertz and John Fletcher of 37 countries which found that outside Northern Europe the vast majority of genetic counsellors hold overtly eugenic views and directed their patients on conception or termination accordingly. This seems to confirm McGee's observation that as early eugenicists spoke of improving the gene "pool", at the present time, "Genetic tests are allowing clinicians to play the role of lifeguards." It is also clear who they are encouraging to drown.

III

Besides the question of prenatal testing and abortion, there is also the broader question of the possibility of "making" instead of "having" children; realising a genetic/eugenic ideal- the perfect person- through screening and/or more invasive genetic engineering. Hughes has even looked forward to parents being able to choose their children's characteristics from a gene catalogue. However, assuming state direction (either through compulsion or incentives), not only would some form of increased genetic homogeneity be problematic, but as the old adage has it, you can't make angels until you know the dimensions of heaven. It is within these god-like realms that the Human Genome Project's promise of unlocking the key to human life by complete genetic mapping invites an eugenic interpretation. After all, how else are we to decipher the idea of an assumed genetic norm except as one which conflates the outlines of heaven and the image of its angels ?

Further to the above point, Jonathan Beckwith, a professor of microbiology and genetics writing in 1974 about genetic screening laws in the US (which he argued represented the beginnings of a new eugenics program) asked, "Who will exercise control? Who will make the decisions about which genes are defective, and which behaviour abnormal? Who will make the decisions about the genetic worth of prospective human beings?"

While we may object to such decisions being made at all, it has been happening in health services informally for years. As Glenn McGee has observed, in the near future, "Virtually every culture will have to cope with an unparalleled pressure to conserve social resources by applying pressure to individuals in an attempt to modify their reproductive behaviour and other life choices." Other "life choices" are likely to include death, as euthanasia becomes a "choice" for elderly or disabled people whose quality of life is deemed socially insupportable - both personally (people being made to feel they are a burden) and in terms of resources.