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Genetic Engineering Is Disabling

Editor's Note: Editor's Note: The following article is reprinted from the Hamilton Spectator, July 18, 2002.

As part of an ethics course, I was recently reading Genohype: The Overselling of Genetics by Neil Holtzman. When a fellow disability rights advocate phoned and asked what I was doing, I told him I was reading about genetics. "You mean the new wave quick fix for getting rid of us?" he joked.

His reaction isn't uncommon among disabled people, especially those of us who advocate disabled people's rights. We feel a strong sense of community, have an understanding in who we are and have become acutely aware of the many forms of discrimination and human rights abuses which, for us, define disability. We now see another abuse is being added--discrimination because of what genetics claims to offer.

So what does it offer? Cures, of course--the final solution for disability.

This sounds great for most people. After all, does society want children born with spina bifida or cystic fibrosis? If these and other conditions can be prevented with the help of clinical genetic treatment, what could possibly be the problem? There are, of course, a great many problems. But the most obvious is that after billions of dollars and a decade of orchestrated hype from the biotech-medical industry, there is no gene therapy that has worked.

With no effective somatic gene therapy likely and even researchers like Dr. William French Anderson, the pioneer of gene therapy, admitting that we are probably two decades away from successful germ-line therapy, where does this leave disabled people right now?

Well, we can talk about "what if" forever. Visionary ideas have their place, but instead let's talk about what is. And "what is" is simple: The only proven cure for most genetic conditions is Peter Singer's infanticide, abortion following genetic testing, or embryo selection as part of in-vitro fertilization.

Singer is a controversial Princeton bioethnicist who is arguably the most influential philosopher in the world today. He is a utilitarian philosopher who argues strongly for animal rights. Yet on the other hand, he banishes disabled people from the realm of "personhood" by advocating the elimination of severely disabled babies, who he claims would only become burdens to society.

Now, and for some time to come, the biotech steamroller has nothing to offer disabled people. But perhaps the worst aspect of the entire project is that it has come in a wrapping that is, itself, disabling. To justify the steamroller, disabled people have been presented, at best, as objects of pity, and at worst, as costly mistakes that could be avoided. Why else would we need so desperately to be cured? Why else would Bob Edwards, world-renowned embryologist and IVF pioneer, have said recently: "Soon it will be a sin of 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 children."

This view is reminiscent of mediaeval religious ideas of disability being a punishment for "the sins of the fathers". Talking about the genetic "quality control" of children as a new public responsibility is reminiscent of ideas prevalent in the 1930's about threats to the population stock from those classed as "imbeciles," criminals or alcoholics. What do such ideas about the supposed new responsibilities arising from genetic knowledge mean for disabled people and society as a whole?

Genetics is a fast-paced field of scientific development. Disabled people are involved by default because our impairments are used as justification for enormous resources being used for research. In fact, the big bucks may reside more in the increasingly consumer-led approach to reproduction--"positive eugenics"--and the tests to screen out individuals with "bad genes"--"negative eugenics"--rather than ineffective treatments for people with quite rare genetic conditions.

In addition, "new hope" for disabled people is accompanied by the danger of disabled people and others experiencing increased discrimination in employment, insurance, health care provision and education. This is where disabled people feel a responsibility to raise the alarm. There shouldn't be unfair discrimination in our health service, in employment, in insurance--but there is. For years, disabled people have been turned down for jobs that they were qualified for, denied or charged high premiums for insurance for spurious reasons. The discrimination that disabled people have faced and continue to face should act as a warning about what may come.

Many in society see disability as a purely medical problem--and genetics offers new "empirical" evidence to bolster this view, alongside the promise of potential miraculous solutions. For those of us who see disability as a political and human rights issue, the "cure" for the negative experiences that many disabled people face lies elsewhere--in according value to people's lives, in ensuring that society is accessible and open to the needs, rights and talents of disabled people. It does not mean a rejection of good quality health care available on an equal basis according to need, not resources or judgments about "quality of life".

It is clear that while the hype has been about cure, the reality is about termination. Under the wheels of the biotech steamroller, a climate of intolerance against disabled people is being encouraged.

Most disabled people do not oppose medical research or genetic testing--if it is part of an ameliorative therapy or the treatment of illnesses or genetic conditions. What is opposed is eugenic cleansing carried out in the name of treatment. The price is too high for everyone.