A new non-invasive genetic test (using blood draw), MaterniT21 Plus, claims it can detect Down Syndrome at 10 weeks of pregnancy. Matt Lauer, inadvertantly no doubt, stepped into the controversy of genetic testing and abortion during a Today Show segment with two parents who had undergone the testing and had a live reveal of the sex and also the Down Syndrome status of their baby. Lauer referred to the negative Down Syndrome result as “good news” (his exact phrase “Let’s get right to the good news,”) with the mother-to-be saying “[w]e are safe. The baby does not have Down syndrome,” giving rise to controversy among the disability rights community. To be fair, later in the segment there is a discussion of the fact that the couple had stated that should they find out the child had Down Syndrome they would not abort but instead see “specialists” and “get more information.”
A couple of reactions: While I do not think it per se unethical and certainly not illegal (wait did Matt Lauer just make a HIPAA joke on TODAY, that’s a first?!!!) there is certainly something unsavory about having a “Down Syndrome reveal” on live television. I wonder if TODAY would have broadcast the segment if the test was positive and the emotional reaction of the parents had been less warm? Second, I think the dust-up over the “good news” language points to a deeper set of issues. On the one hand, disability rights advocates reasonably chafe on America’s heavily watched morning program hammering home the message that it is “bad news” to have a child with Down Syndrome. On the other hand, this may be an accurate reflection of where we, as a country, currently are on the issue, rightly or wrongly.
Prior attempts to change our views on this issue, such as passage of the American with Disabilities Act (ADA), does not seem to have helped. In fact, in a 2009 analysis using data from 1989 to 2002, Dov Fox and Christopher L. Griffin argue that their analysis
yields suggestive evidence that the ADA led to a short-term
decline in the Down syndrome birthrate. By 1993, the birthrate fell by between 13 and 18 per 100,000 relative to the pre-ADA period when controlling for demographic and medical care variables.. . . The decline in Down syndrome birthrates coincided with steady amniocentesis rates and increased sharply at the same time screening became less frequent. These collective findings suggest persuasively that the ADA’s effect on reproductive decision making was in large part responsible for the mid-1990s decline in the birthrate of children with Down syndrome. (p. 871).
On the one hand, this suggests that tests like MaterniT21 Plus are very likely to lead to further diminutions in the Down Syndrome birth rate (largely through disability-selective abortion). On the other, it seems to suggest that Lauer was being descriptively accurate in that many prospective parents would consider it “good news” to get a negative test, and many would react to the “bad news” of the opposite result by having an abortion.
If the ADA has not changed attitudes to children with Down Syndrome and the burdens related to it, what would? That is a much bigger conversation, but a non-legal academic friend who works with disability communities recently told me that in navigating special education programs in the U.S., many parents essentially have to “become lawyers” at least figuratively, and learn the intricacies of the statute and the legal and non-legal threats they can use to motivate decision-makers. This leads to the question whether investment in special education programs — very much in keeping with the social model of disability’s critique of support for people with disabilities — would do more to change the steady increase in abortion of fetuses with Down Syndrome that appears to be occurring in this country?