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The disappearing disabled
Dread genetic diseases are disappearing -- because parents and doctors are eliminating the children who have them.
Any allusion to present day biomedical practices as being eugenic usually leads to quite hysterical denials and the accusation that one sees everything one disagrees with as being painted with the inappropriate Nazi brush.
I’ve heard all the arguments, so please spare me: The only people who were Nazis were the Nazis. The only things that are eugenic are what the Nazis did in the interests of breeding a more superior race. Genetic research in this day and age is an absolutely cutting edge, wonderful, and very necessary ethical endeavor.
The howling eugenics deniers will even concede that eugenics didn’t originate in Nazi Germany (the US and the UK have that distinction), and, if pressed, that some prominent historical figures supported eugenics (Margaret Sanger and Winston Churchill among them). But that’s as far as it goes. The prevailing zeitgeist holds that eugenics was a terrible thing in a time gone by. It doesn’t happen any more. We learned from our collective social mistakes.
The thinking behind eugenics isn’t very difficult to understand. People are different in many ways. Some of these differences are socially and medically acceptable, others are not. We need more people with socially acceptable traits, fewer people with undesirable traits. There are two ways to do this. One, we passively encourage people with undesirable traits not to reproduce, but this takes a long time to reduce the undesirable population. Two, we actively take steps to eliminate those with undesirable traits by whatever means we can. Historically, that has meant sterilization, abortion, laws banning people with undesirable traits from marrying or reproducing, and the killing of so-called defectives.
Which brings us to an AP story that surfaced recently.
Essentially, the article makes the case that advances in genetic screening are reducing the incidence of children born with a wide range of genetic anomalies, so much so that several genetically-induced disabilities are close to being completely eliminated. However, the AP is, unintentionally but clearly, an exemplar of the spin that has morphed eugenics from a reprehensible horror to a heroic and loving social responsibility with predictable results. Eugenics is now called preventive medicine.
As increasing numbers of women undergo prenatal testing at the behest of their physicians, genetic counselors, and medical organizations, more and more unborn children with genetic anomalies are being detected. The result? A genetic sorting that makes some unborn children (and human embryos) second-class citizens fit only for death.
What you think of this state of affairs depends on your views about the exceptional nature of human life. However, there are two undeniable certainties. One, unborn children with genetic anomalies are now much more likely to be aborted than their more perfect peers. Two, abortion cures genetic anomalies 100% of the time.
I have no argument with parents who are genetically tested and decide not to take the risk of reproducing children who might have some form of genetic disability. This is preventive genetic screening used appropriately and ethically. The turning point emerges when a human life is created and decisions are then made that some should live because they are more genetically perfect while others are destroyed because they are genetically less perfect. This genetic discrimination is already a matter of policy of several major medical associations, including the American College of Obstetricians and Gynecologists. ACOG, for example, strongly recommends that all white women be genetically tested for cystic fibrosis and that in-utero testing for Down syndrome be extended to all pregnant females, not only older women who are most at risk.
While lip-service is often paid to presenting the pregnant women whose fetuses are genetically disabled with all possible options, including giving birth, there is evidence suggesting that in the real world of the doctor’s or geneticist’s office the pressure is much more likely to be for abortion than anything else. Most commonly, health professionals convince parents that their child will have a lower quality of life, be subject to expensive and possibly painful medical procedures, and that the child will have a limited lifespan.
The AP piece reports the inevitable results. For example, in Massachusetts the instances of live births with cystic fibrosis dropped from a relatively high of 29 in 2000 to 10 in 2003 as mothers opted for abortion over delivering a genetically disabled infant.
There are similar trends in California where in 2006-2008 Kaiser Permanente offered genetic screening for cystic fibrosis. Of the 87 volunteer pregnant couples genetically predisposed to producing offspring with the anomaly, 64 fetuses were anomaly-free, while 23 were found to have cystic fibrosis. 16 of the 17 who were more severely afflicted were aborted. Of the 6 with milder forms of the disease, four were aborted.
Easy math: 23 unborn children singled out only and exclusively because they were genetically disabled, 21 disposed of. The other 64 genetically nondisabled unborn children were allowed to live – only because they were of purer genetic makeup.
How is this not eugenics?
Professor Mark Mostert teaches at Regent University School of Education, in Virginia. He is a director of the Institute for the Study of Disability and Bioethics and runs a blog, Disability Matters.
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