Author: ‘Medical genetics is not eugenics’
May 15th, 2008
From the Chronicle of Higher Education (subscription required):
Author Ruth Schwartz Cowan defends prenatal genetic screening against claims of eugenics, rejecting claims by disability activists that it is a form of discrimination against people with disabilities. She says academics and journalists should stop making good people feel unnecessarily guilty about prenatal genetic screening.
Genetic screening was developed by medical geneticists to help the genetically “unfit,” precisely the people the eugenicists would have sterilized, have as many children as they wanted.
… Disability activists claim that genetic screening is a form of discrimination against the disabled — but it seems unlikely that the parents who banded together to form associations like the National Tay-Sachs Disease Association or the Cyprus AntiAnaemic Society or the National Association of Retarded Citizens would agree.
Disability activists also worry that as genetic screening diminishes the number of children born with disabilities, services to disabled people will decrease. There is no evidence to suggest that this has happened, even though screening programs have existed for decades … Contrary to what some disability activists assume, many people support widening the rights of disabled children and adults while simultaneously believing that abortion for fetal indications is morally wise.
… Genetic screening increases reproductive choice, and it also provides hope, hope that many parents never had before — hope of having, not a perfect child, but a child who, at least at the start of life, is free of devastating disease or overwhelming disability.
Ruth Schwartz Cowan is a professor of history and sociology of science at the University of Pennsylvania. This essay is excerpted from Heredity and Hope: The Case for Genetic Screening, to be published in May by Harvard University Press. Copyright Harvard University Press.
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May 16th, 2008 at 5:07 am
The evidence that using genetics to eliminate “devastating diseases” and “overwhelming disabilities” takes us down a slippery slope is shown because the same techniques are being used to eliminate Down syndrome which is NEITHER.
Eliminating most of a population does endanger everyone who is left and this is demonstrated with thalassemia (and any other condition that gets eliminated pre-birth) because the efforts toward cure, effective treatment and amelioration of symptoms slows to a standstill — the money gets spent on elimination rather than research (and all of the information learned during the research that would benefit other conditions/diseases is also prevented.)
What if the physicians that got to Cyprus first were outstanding hematologists instead of geneticists? Would the world have advanced in the understanding and treatment of blood disorders and dyscrasias? Instead we study the effects of eliminating certain people on an island …. which, frankly, we could learn watching Survivor. Yuck.
May 15th, 2008 at 2:57 pm
University of Pennsylvania, huh? They diagnosed my child, offered me an abortion several times, and gave me NO information about Down syndrome. But it’s not eugenics. Right. I guess I should have told them in advance that I would not terminate. Oh, wait, I did that. Maybe I should have been clear and firm. Oh, wait, I was.
You can all it whatever you want — politically right, moral, whatever - but so long as disabilities are misunderstood, inaccurate or little information is given, and termination is pushed — it is a specific targeting of a population for elimination.