Many American women terminate their pregnancies when they discover their child will have Down syndrome. Is that so different from mothers in other parts of the world who abort unwanted girls?
In her Pulitzer-Prize nominated book Unnatural Selection: Choosing Boys Over Girls and the Consequences of a World Full of Men, journalist Mara Hvistendahl takes a close look at the distorted sex ratios among the populations of China and India. Hvistendahl writes, "sex selection has resulted in an imbalance of over 100 million more men than womenworldwide." Inexpensive ultrasound technology has enabled this imbalance as couples can now learn whether they are having boys or girls and respond with "selective abortions" if having a girl seems undesirable.
Social conditions and systemic bias against women contribute to the millions of couples worldwide who choose against giving birth to a girl. As the Economist explained a few years back, "Perhaps hard physical labour is still needed for the family to make its living. Perhaps only sons may inherit land. Perhaps a daughter is deemed to join another family on marriage and you want someone to care for you when you are old. Perhaps she needs a dowry." Social conditions, economic reality, even the prospect of being able to provide adequate long-term care—all of these factors contribute to the decision to abort girls.
In the West we decry these practices as gendercide, but the United States practices its own form of selective abortion when it comes to fetuses diagnosed in utero with Down syndrome and other chromosomal conditions. Definitive numbers related to pregnancies terminated as a result of a prenatal diagnosis of Down syndrome are hard to come by. Older studies suggest that up to 90 percent of all pregnant women with a definitive prenatal diagnosis chose abortion. As Jamie Natali, et. al. demonstrated in the Journal of Prenatal Diagnosis, more recent studies put the number closer to 70 percent. Either way, women who learn through prenatal testing that their fetuses have Down syndrome often decide to abort, and their reasons aren't that different from the reasons women across the globe choose (or are forced) to abort girls. In India, daughters grow up with social stigma, a lack of educational opportunities and the prospect of becoming a burden to their parents. Substitute the words "America" and "children with Down syndrome" for "India" and "daughters," and you get the picture.
Down syndrome occurs upon conception when an embryo receives three copies of chromosome 21 instead of the typical pair. This additional chromosome can lead to physical differences such as shortened stature, an extra fold of skin around the eyes, small facial features, and pronated feet. It can also lead to medical concerns that vary from person to person but include heart defects, hearing deficits, and a heightened risk of childhood leukemia, hyperthyroidism, and celiac disease. Down syndrome also usually involves some unpredictable degree of intellectual disability, so many individuals with Down syndrome have greater challenges to overcome when learning or when trying to live independently as adults.
It is precisely because of information like this that many people choose to abort a fetus diagnosed with Down syndrome. These medical and social challenges seem fixed and unchanging. But as the past 40 years demonstrates, these challenges reflect social mores and choices as much as biologically-based reality or necessity. In 1975, Congress ensured all children's rights to a free public education, including those with intellectual disabilities. Around that same time, parents on the whole stopped sending their kids with Down syndrome to institutions and availed themselves of "early intervention," therapy services that target physical and brain development from very early on in a baby's life. In 1980 the life expectancy for an infant with Down syndrome was 25. As a result of social change and medical advances, people with Down syndrome are now expected to live until at least 60. And people with Down syndrome overcome expectations every day. They read, they write, they go to work, they make friends. When given the opportunity, they lead lives of hope and promise.
Although most women with a prenatal diagnosis of Down syndrome choose to terminate, even within the United States demographic differences demonstrate the socially-construed nature of these personal choices. A broad study by James Egan, et. al. in the Journal of Prenatal Testing analyzed demographic differences in Down syndrome livebirths in the United States from 1989 to 2006. As the study records, "a Down syndrome fetus is more likely to be prenatally diagnosed and terminated in the West and least likely to be diagnosed and terminated in the Midwest" and, "women with 12 or fewer years of education were less likely to either receive a prenatal diagnosis of Down syndrome or terminate an affected fetus compared to women with 13 or more years of education." In other words, social context affects the decision to abort.
Americans recognize the discriminatory nature of allowing sex to determine the value of a human life. We should also recognize the discriminatory attitudes that can lead to selective abortion in our own country. There has never been a better time to be born with Down syndrome, medically, educationally, and socially. We can overcome the residual cultural bias towards individuals with intellectual and physical disabilities not through pregnancy termination but through social supports, inclusive classrooms, and a culture that recognizes the distinct contributions offered by each individual.