New Era, New Worry
New tests for Down syndrome could lead to more abortions and less support for families.
Beth Allard was recovering from labor, waiting for a hospital photographer to capture her newborn son's first day in the world, when a pediatrician walked into her room and told Allard her life was ruined. Allard might have expected as much from a doctor, given what she'd already heard from others in the previous few months: little Ben, who had tested positive in utero for Down syndrome, would be mute and illiterate, they said; he would spend his life hanging off her, drooling. The pediatrician was harsher: "You should consider putting him up for adoption," she said. "You're going to end up divorced. Don't even bother having any other children. Didn't you have the option to terminate?" Finally, the pediatrician left, and Allard resumed her wait for the photographer. He never came.
Ben Allard is now 9, and it's hard to understand why doctors were convinced he would be such a burden. He's a friendly, witty kid who's happily enrolled in third grade at a regular school. He does, says Beth, "all the things they told us he wouldn't be doing, and more." She shudders when she thinks about how wrong the doctors turned out to be: she almost took their advice and ended her pregnancy.
She would not have been alone in that decision. Life with Down syndrome can be very challenging for both parents and kids, and according to studies, 90 percent of women whose fetuses test positive choose to abort. Now, because of a technological advance, pro-life and disability advocates worry those numbers may rise even higher. Currently, Down syndrome is picked up with blood screens and ultrasounds, then confirmed with invasive tests such as amniocentesis and chorionic villus sampling, which insert needles into the uterus and slightly increase the risk of miscarriage. Some women forgo the tests for that reason. Next year, though, new, noninvasive genetic screens that pose no harm to fetuses or mothers may start arriving in doctors' offices. If they become common, they could result in more diagnoses, more abortions, a dwindling Down population and a drop in support for families who carry to term—what Down activist Patricia Bauer has called "the elimination of an entire class of people." Even now, only 5,000 babies are born with the syndrome each year.