As Down detection gets easier, choices harder
Professor Hank Greely spoke with the Boston Globe's Carolyn Y. Johnson about concerns surrounding noninvasive prenatal tests, especially among those with the Down syndrome community.
On a stormy Valentine’s Day in 2007, Courtney Kane felt herself detach from her body and float up to the ceiling. She watched as the figure below, 19 weeks pregnant, reclined on a bed in an exam room, talking to a doctor and a genetic counselor.
Her husband, Trafford, was holding her hand. Her mother had come along for support. She felt as if the rest of the world had dropped away and they were alone, like characters frozen in a spotlight on a stage.
Are the new, noninvasive prenatal tests "something to worry about or something to celebrate? The answer is yes," said Hank Greely, a bioethicist at Stanford Law School. "It depends on who you are and what you believe."
He said that a safe test that allows women to get accurate information about their pregnancy — including the challenges they may face — is a benefit. But the concerns of people within the Down syndrome community are real, because a shrinking community of people with Down could lead to less support for research and treatment, and reduce societal acceptance of people with the condition.
"Those are really legitimate concerns for the Down community and I think they should be legitimate concerns for all of us," Greely said. "Disabilities, disadvantage, heartbreak, tragedy sometimes bring out the best in people. But we still, in general, set up our society to try to avoid them."