Feature

If you tolerate this, your children will be next

Whatever geneticists good intentions, the application of their research could result in eugenic policies against disabled people, argues Bill Albert

Genetic research and its clinical applications are creating an ethical minefield. Disabled people offer a unique perspective on the issues and one which may help everyone chart a safer route. This is because we know the real territory which genetics assumes as its own – the quality of our lives. And 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.

But we do not want to be eliminated by contemporary colonisers, the geneticists. Neither do we want people who might be like us to be eliminated. Our lives have a value equal to that of able bodied people. While our impairments might cause us pain or inconvenience, few humans 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 very right to exist.

A key reason for this is that disability, popularly seen as a living death, is identified as a medical problem. This has allowed the new genetics to take the stage, brashly proclaiming its promise of a medical solution.

The claims fit the prevailing trend in medicine, which is a narrowing focus on the pathology of disease and away from complex considerations of the broader social experience of illness. Prenatal genetic testing is the logical extension of this focus – a simplistic equation of disability with genetic ‘abnormality’.

But most people with genetic impairments lead lives that are fully worth living. And 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. So even if the threatening promise of a final genetic solution is found, disabled people will still be around. Instead of trying to eradicate human diversity, society will have to adjust to it.

It is ironic that just as that adjustment is beginning to be made, with official recognition of disabling discrimination (the UK Disability Discrimination Act, the US Americans with Disability Act and similar legislation in other countries), we seem to be on the verge of a more subtle, eugenic offensive which publicly speaks the liberating language of improved health but whose subtext is the more sinister ideal of ‘improving the human race’.¹

Despite its unsavoury heritage, the eugenics ideal persists. It has changed its costume, but the song is still the same: class or race, for all but the most extreme, are no longer at issue, instead the biological quality of human populations is the target. Advances in genetic engineering seem to hold out the prospect of moving us closer to Francis Galton’s ideal of being ‘good in birth’ (the 19th century founding father of eugenics).

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.²

Is it not 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 be the objection?

The answer, aside from the fact that gene therapy remains a distant prospect³ and that there is rarely 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 than not to the elimination of a ‘suspect’ foetus.

While women should have free reproductive choice, that choice is anything but free in relation to disability. It is heavily circumscribed by cultural, social and economic pressures which work powerfully against a woman’s right to choose to continue with a pregnancy after an ‘abnormality’ has been detected.

British abortion law enshrines prejudice by disallowing termination after 24 weeks unless an abnormality has been discovered.

While it would be wrong to label a woman’s individual choice as eugenic, such a choice is informed by assumptions about what is an acceptable quality of life. At a societal level these assumptions are often nakedly eugenic. 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.

Prenatal, or even postnatal, genetic testing may lead not only to eugenically informed terminations but also fosters a climate of intolerance against disabled people. Responding to a recent British Council of Disabled People (BCODP) discussion paper on disability and genetics, a disabled woman wrote: ‘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.’

King argues that the histories of genetics and eugenics are inseparable and that there are powerful eugenic assumptions underpinning current genetic research and clinical practice.⁴ He quotes a 1994-95 study of 37 countries, which found that outside Northern Europe the vast majority of genetic counsellors held 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’, nowadays ‘genetic tests are allowing clinicians to play the role of lifeguards’. ⁵ It is clear who they are encouraging to drown.

Alongside the question of prenatal testing and abortion, there is the broader issue 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 (through compulsion or incentives), not only would some form of increased genetic homogeneity be problematic but, as the 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 mystery of human life by complete genetic mapping invites an eugenic interpretation.

Writing 25 years ago about genetic screening laws in the US, Jonathan Beckwith, a professor of microbiology and genetics, 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?’⁶

While we may object to such decisions being made at all, health professionals have been making them informally for years. As 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.’⁷

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.

As Hughes demonstrates, the rise of genetic essentialism may cause people to lose sight of, or never gain, an understanding of the social, economic, cultural and political bases of disability.

This may not seem a serious problem in countries like the UK, where the disabled people’s movement has started to convince government that disability is a human rights issue. But there is no room for complacency, nor can we minimise the potential risks to disabled people here or in other Western countries.

In parts of the world where disabled people’s movements are weak, the idea that genetics holds the solution for the ‘problem of disability’ might lead to blatantly eugenic policies of forced screenings and abortions, and even compulsory sterilisation and/or euthanasia. The first two are already happening in China where, since July 1996, pre-natal testing has been compulsory, as has the abortion of any ‘abnormal’ foetus.⁸

Even if we accept at face value the anti-eugenic statements of geneticists and their supporters, the new genetics is creating a powerful eugenic sword that could be unsheathed by a government willing to forget the lessons of the 1930s.

What happens when the next country follows the Chinese example? And then the next? What practical worth then are the ‘sincere intentions’ of genetic researchers?

Disabled people do not oppose medical research and genetic testing if is part of an ameliorative therapy or treatment for illnesses or genetic conditions. What we do oppose is eugenic cleansing carried out in the name of treatment. The price is too high – for us and for everyone else. Today disabled people, tomorrow, who knows? Children with the supposed ‘gay’ gene? Those with the ‘criminal tendency’ gene? Or maybe those who are alcoholic or too aggressive or not intelligent enough? Or only those foetuses which might develop heart disease, cancer, Alzheimer’s, or other costly ailments? Once it is allowed to begin, no-one can predict or control where it will end.