This fall various groups, including the National Institutes of Health and the federal Centers for Disease Control, are rallying behind the radical ideas that people with Down syndrome are valuable and deserve to live. Radical? Apparently. Thanks to new genetic testing capabilities, prospective parents are aborting those unborn children merely suspected of having three copies of the 21st chromosome instead of the usual two at a staggering rate of 90 percent.
Washington Post columnist Patricia Bauer thinks that's a tragedy:
We cherish our friends and family members and think their unexpected extra chromosome is not the most important thing about them. And we worry that the relentlessness of genetic testing is amplifying stigma and bias against the 350,000 flesh-and-blood Americans who have the condition, as well as people who have other conditions that are now or soon will be prenatally discoverable.
In recent conversations with obstetricians and gynecologists, I've found that we family members aren't the only ones with these fears. Physicians say they're disturbed by mounting demands from prospective parents for nothing less than the "perfect" child, and by lawyers who troll for lawsuits against doctors who have the misfortune to deliver nonstandard babies. Not long ago, a Florida jury awarded a couple more than $21 million when their doctor failed to detect an obscure genetic condition prenatally.
Doctors are left to practice defensive medicine, ordering expensive tests and drowning patients in mind-numbing data, while parents labor under the misapprehension that they have a duty to terminate if the tests so dictate.
Bauer, who has an adult daughter with Down syndrome, has an information-packed website on disability-related issues. May such voices multiply in a society that increasingly looks at the less-than-physically perfect as not worthy of life.
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