Monday, May 14, 2007

Down Syndrome Babies: An Endangered Species?

Recent developments in genetic testing are revolutionizing the ability to test for a variety of genetic disorders in unborn babies. Before now, this required a difficult, painful, and potentially hazardous procedure called amniocentesis, ususally reserved for expectant mothers over the age of 35. Amniocentesis itself carries a 0.5% miscarriage rate, but it has been used to diagnose such conditions as Down Syndrome, Tay-Sachs Disease, Sickle Cell Anemia, or Duchenne Muscular Dystrophy.

Now there is a simple blood test, recommended for all pregnancies, that reduces the risk for moms, but may dramatically increase the number of genetic disorders diagnosed prenatally. If past history is any guide, this means that 90% of women whio are told their baby has Down Syndrome will choose to have an abortion (reference).

What will be the results of such selection? Well, for one thing, fewer babies with diabilities - and this has many parents who advocate for them rather worried:
A dwindling Down Syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain (NY Times).
Parent advocates are worried that doctors don't know how to handle the genetic information they now so easily obtain with two blood tests and a sonogram. Many physicians agree -- the best way to share a genetic diagnosis is not: "Your baby is going to be mentally retarded, you should have a pregnancy termination."

This does not mean that the future will be easy for parents who decide to carry their diabled child. But parents of the disabled see the new form of testing as one more step towards a society that doesn't welcome any imperfections. Commentator George F. Will called it a "search and destroy mission" for the handicapped (Will has a grown son, Jon, with Down Syndrome). In complaining about the new recommendations, he adds:
What did Jon Will and the more than 350,000 American citizens like him do to tick off the American College of Obstetricians and Gynecologists? It seems to want to help eliminate from America almost all of a category of citizens, a category that includes Jon (Newsweek).
Imagine a society where every one of us is genetically perfect, where none of us must strive for the small, daily steps of success that mark our physical, emotiojnal, and mental growth. I, for one, would not want to live there.

New York Times Article