With 90% of pregnant women aborting a Down syndrome child after a positive prenatal test, American parents of Down syndrome children are turning into activists to protect their children’s future. According to a special report in the New York Times, a dwindling Down syndrome population — now about 350,000 in the US — could mean less institutional support and reduced funding. Even though many of these parents describe themselves as pro-choice, they oppose eugenics. "For me, it’s just faces disappearing," says a New Jersey mother. "It isn’t about abortion politics or religion; its a pure ethical question." A number of people are asking doctors to send them couples who an abortion so that they can meet their children.

They have a greater sense of urgency after the American College of Obstetricians and Gynecologists recommended in January that all women, regardless of age, be offered a new screening test to detect Down syndrome early in a pregnancy. Although critics term this a "search and destroy" mission, some doctors see nothing wrong with it. Cute as they may be in childhood, they claim, Down syndrome children may be at risk of early-onset Alzheimer’s disease, thus saddling ageing parents with even more onerous responsibilities.

There are many couples who do not want to have a baby with Down syndrome," said Deborah A. Driscoll, of the University of Pennsylvania, an author of the recommendations. "They don’t have the resources, don’t have the emotional stamina, don’t have the family support. We are recommending this testing be offered so that parents have a choice."

But as the Times points out, doctors often paint too gloomy a picture. "She may be able to count change for the bus," one doctor told a pregnant Delaware woman. "But what’s going to happen when the bus doesn’t come?" Her Down syndrome daughter, now 5, does not yet take the bus, but she does ride horses.

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Michael Cook

Michael Cook edits BioEdge, a bioethics newsletter, and MercatorNet, an on-line magazine whose focus is human dignity. He writes from Sydney, Australia.

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