“Tell Them It's Not so Bad”: Prenatal Screening for Down Syndrome and the Bias Toward Abortion

Abstract

As a reporter and editor at the Washington Post, the Los Angeles Times and elsewhere, I met with presidents and governors, senators and congressional leaders, and more celebrities than I'd like to think about. All those experiences taught me to think for myself, to observe closely, and to question conventional wisdom.But none of the people I met in my journalistic travels has influenced me nearly as much as my daughter, Margaret. It has been my privilege to spend 23 years in the joyful company of someone whose life many people think should have been prevented. My journey with her has taught me to question just about everything.Here's a glimpse from our travels. A few years ago, at a dinner party in Los Angeles, I found myself seated next to the head of an Ivy League ethics institute. After the usual pleasantries, I asked him about his research. And so he told me, over the soup course, that he was writing in the area of genetics. He felt prospective parents have a moral obligation to terminate fetuses with disabilities in order to avoid human suffering.It was all I could do to keep from dropping my spoon. This man didn't know it, of course, but what I heard him saying in effect was that my daughter should never have existed—that my husband and I had a moral obligation to eliminate her before she messed up everyone's lives, and we blew it.When I managed to collect myself, I said as gently as I could that my daughter had Down syndrome and that she was a source of delight to us all. I also managed to say she wasn't “suffering” any more than anyone else, as near as I could tell, and was doing just fine in her neighborhood public school.What surprised me even more than his initial comment was what came next. The gentleman smiled quizzically at me, as though the words “loony fringe” had crept across my forehead. He changed the subject. And he suddenly began an animated conversation with the person to his left. He had concluded that there was nothing for us to talk about.It was then that I began to see what had been happening behind closed doors during the years that my daughter had been faithfully doing her homework, singing in the school chorus, and going to Girl Scout meetings. Somehow, while we weren't paying attention, a large and profitable industry had grown up around prenatal testing, shaping public attitudes toward disability and reinforcing the notion that people like Margaret shouldn't be among us.All this came to mind again in January 2007 when the American College of Obstetricians and Gynecologists (ACOG) released its recommendation that all pregnant women regardless of age should be offered prenatal screening for Down syndrome. (Subsequently, in December 2007, ACOG recommended that amniocentesis and chorionic villus sampling should be available to all pregnant women.)We must assume, because there's no in utero cure for Down syndrome, that the primary purpose of all this screening is to facilitate early termination. Clearly, this is the way the public has reacted. It is estimated that 85% to 90% of pregnancies in which Down syndrome is diagnosed end in abortion.To me, it is more than ironic—it's tragic, really—that the historical moment in which science has become really proficient in detecting Down syndrome prenatally is exactly the moment in which those who have intellectual disabilities have begun to benefit from political and social forces like early educational intervention, inclusion, improved health care, and better educational opportunities and are doing better than ever before.Unlike many of you, perhaps, I've been blessed to have had a couple of decades to observe people who have intellectual disabilities closely as they move from infancy to toddler to teen to adult. And what I can tell you is that people with Down syndrome are in most fundamental ways more like everyone else than they are different.Consider this excerpt from the article “What I Wish I Knew Then: Reflections From Personal Experiences in Counseling About Down Syndrome” (Brasington, 2007), which was written by a genetics counselor and published in the Journal of Genetic Counseling.Those attitudes that Brasington refers to, which are perpetuated and amplified by the ACOG recommendations, are the fallout of years of stigma and low expectations, holdovers from the bad old days when our society did not give people like these any kind of support.Let's go back and remember what life was like when science first embarked on the development of prenatal tests for Down syndrome. Well into the second half of the 20th century, doctors didn't think these individuals were capable of learning. Many physicians opposed giving them medical treatment on the grounds that it would be cruel to raise parents' hopes. In withholding standard medical treatment, some said it was kind to “let” them die.It was routinely recommended that children with disabilities be sent to institutions. In that atmosphere, parents could perhaps be excused if they believed