What does “preventive” mean?
Mark Leach (whose guest post this morning, “Supreme Court Unexpectedly Upholds Regulatory Elimination of Down Syndrome,” created quite a stir) and many others take it to mean that the government is advocating the prevention of the birth of children with Down syndrome. “Preventive,” by this reading, means an attempt to prevent Down syndrome. But many of you who commented today read “preventive” to mean something quite different. You read this language as giving doctors the ability to identify conditions like Down syndrome in utero and thus be better equipped to treat any subsequent health problems that arise as the pregnancy progresses.
Mark Leach’s post mentions a study about prenatal testing in California. He writes:
California has had a state prenatal testing program since the 1980’s. Program researchers have stated that the program’s purpose was to reduce the number of babies born with Down syndrome.
I asked him for the quotation he references since the full article is not available online. He replied with the quotation:
The California Prenatal Screening Program works to reduce the occurrence of birth defects and disability by offering prenatal screening and follow up services to pregnant women in California.
Are they intending to “reduce the occurrence” of Down syndrome itself or of potential complications associated with Down syndrome? Does “follow up services” mean abortion services or a more comprehensive set of medical options?
Back to the PPACA. What does “preventive” mean?
Perhaps to get at the answer it’s worth asking two other questions:
1. What is the intention of prenatal testing?
2. What is the result of prenatal testing?
I’ve recently been reading Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America by Rayna Rapp. Rapp chose to abort a baby in 1983 after an amniocentesis led to a diagnosis of Down syndrome. This experience led to a decades-long exploration of the significance of prenatal testing within our culture. Rapp writes, “The technology of prenatal diagnosis was developed explicitly to allow the selective abortion of fetuses facing serious disabilities because of atypical chromosomes and genes” (70). In other words, the initial purpose of prenatal testing was to give women the option to abort, and the vast majority of women who opted for such testing did so.
But even if prenatal testing was developed for the purpose of selective abortion, has selective abortion been the result? Moreover, is the government suggesting selective abortion of fetuses with Down syndrome as a collective good in the language used within the Affordable Care Act?
I’ve written before about the errors within the oft-quoted statistic that “90% of babies with Down syndrome are aborted.” This statistic is wrong for a variety of reasons, including the fact that it is out of date. At one point, of the small subset of women who chose amniocentesis during pregnancy and received a diagnosis of Down syndrome, 90% chose to abort. Now the number is probably closer to 70% with wide variations in various parts of the country and with reference to other demographic factors. In other words, prenatal testing with a diagnosis of Down syndrome very often, but with less frequency than in the past, leads to abortion.
And yet, prenatal testing can be used to provide prenatal care. Although the vast majority of women with a prenatal diagnosis of Down syndrome still chose abortion, an increasing number use a prenatal diagnosis as information that helps them prepare well to care for their child whether through emotional preparation or making a decision to give birth in a major medical center.
Is the PPACA’s inclusion of free prenatal testing as “preventive” care really an indication of a desire to prevent the births of babies with Down syndrome? Or is it a desire to help women prepare well for the births of their babies? Or something in between?
Regardless of intention, I hope that our representatives in Congress will call for a change in the language to consider prenatal testing an aspect of prenatal care. Moreover, if our government wants to demonstrate the desire to support and include individuals with disabilities and Down syndrome within our culture, representatives should lobby for funding of the Prenatally and Postnatally Diagnosed Conditions Act. Yes, the act calls for accurate and up-to-date information when offering a prenatal diagnosis, and yet it has gone almost entirely unfunded. At the same time, the NIH has received millions of dollars to pursue prenatal tests.
Prenatal testing was designed for the purpose of selective abortion. An increasing number of women use it for the purpose of prenatal care. Let’s hope the government demonstrates support not only to women who want the option of abortion when facing a prenatal diagnosis but also for the women who understand a diagnosis of Down syndrome as an opportunity to welcome another life into the world.
I am currently working on a book about prenatal testing to be published by Patheos Press early this fall.