Imagine that you had long planned a Paris vacation and, when your plane landed, you were told that it had been re-routed to the Netherlands. Might your disappointment fade as you gradually perceived the peculiar beauty of your surprise destination; fields of tulips instead of the roses you envisioned?
In Testing Women, Testing the Fetus, (1999) Rayna Rapp discusses issues raised by prenatal testing, especially amniocentesis and chorionic villus sampling (CVS). She observes, largely through her analysis of interviews she conducted, or the genetic counseling sessions she audited in New York City hospitals, how these technologies are viewed through the prisms of various cultures or social classes, and, ultimately, how these various persons react, in words and action, to test results that reveal the likelihood of a “congenital limitation.” Hence, the book is more a work of bioethics, anthropology and sociology than of medicine or biology. Rapp borrows the opening metaphor from parents of children with Down’s Syndrome, who don’t look or perform academically like most, but who typically have guileless, loving personalities. Yet, as she aborted a child with a Down’s diagnosis, she does not try to convince the reader to accept tulips.
She briefly describes how amnio, CVS and the attendant genetic interpretation are done and states the ambiguities involved therein. Typically, amnio and CVS are offered to mothers between 13-20 weeks of pregnancy. These tests reportedly carry less than a 1% risk of miscarriage. When she wrote the book, over 800 very rare conditions were sampled for. The main conditions detected by these practices are Down’s syndrome, followed by rarer neural tube defects (e.g., spina bifida), chromosomal defects and some single gene diseases like Huntington’s or Tay Sachs. Among women under 35, one in 400 pregnancies involve a child with Down’s Syndrome; over 35, Down’s occurs in one in 106 pregnancies and, in women over 45, in one of 30. (Aside from the impact of advanced maternal age, the author notes that children of older fathers also tend to pass on greater risks for congenital disabilities. For example, recent studies have shown that older fathers tend to engender more schizophrenic kids). She emphasizes that the vast majority of birth defects or genetic linkages to diseases are not presently detectable.
Historically, most genetic counselors have been suburban Caucasian women who strive to be non-directive but who inevitably bring cultural biases and language to their work. Rapp notes how, with different patients, counselors may either use the word “baby” or “fetus,” “needle” or “insertion,” “sick” or “affected,” and, of course, “abort” or “terminate.”
As this language reveals, there is an unsurprising tendency of formally educated women to medicalize their pregnancies in many ways, including prenatal testing. She notes that while more minority women refuse prenatal tests, many minority women also use them. She implies that immigrants’ thoughts about child/fetal development are colorful to the point of superstition.
I was most stunned by comments of various interviewees that the decision to carry to birth a disabled child revealed the selfishness of the parents who, it was asserted, were displaying their heroism. I guess there are always some outliers: an act that would appear to be the single most selfless thing one can do is viewed, by some, as selfish.
Rapp notes that, generally, amnio and CVS (plus preimplantation diagnosis of the many embryos made in vitro fertilization (IVF)) have made mothers moral pioneers, in that these technologies allow women to decide what types of children they will allow to live. This process will intensify, given the advances in the technology that she describes.
Throughout, the book talks about prenatal diagnosis as a process to ferret out potential disabilities which, as she notes, are socially defined, at least to some degree. Yet, there is no limitation to the search for genetic linkages to traits, including height or body type. There also is no necessary order in which genetic influences on traits will be discovered: the genes for height may be discovered years before the genes for some dread diseases. Labs could confidentially test for any linkage discovered and parents could use these data to select a child’s characteristics. The author expresses consternation that some parents already use genetic screening to determine the sex of the unborn and may decide to abort on this basis. However, as she supports the right to choose, generally, she does not articulate a basis upon which any basis for an abortion is more acceptable than another.
The author includes no firm statistics on what percentage of parents abort because of potential disabilities. She estimates that 90-95% of those who receive a Down’s diagnosis abort. However, comprehensive data are not available because medical relationships are shrouded in confidentiality. The secrecy that surrounds prenatal testing strongly calls into question how “abuses” of genetic screening such as screening for sex or height might be discovered and enforced.
This book is especially relevant because so many women now postpone motherhood. Prenatal screening is a partial technological fix for postponed commitment or divorce and remarriage. Older parents are more selective consumers; they want their one or two offspring to be defect free. Some of those interviewed opined that it is harder to raise disabled kids today precisely because families are smaller and care taking is shared among fewer people. Plus, most Americans do not live near enough to their extended families that extended family members can routinely help. Further, given medical developments, disabled kids often live longer than several decades ago, thus lengthening the period of care that an eventually elderly parent must extend. Yet, while the challenge has mostly grown, Rapp notes that at least formal support networks for parents of disabled kids have improved.
In our society, control is paramount. This book shows how deeply we have internalized the belief in our sovereignty over life. I’ve worked with kids with Down’s and spina bifida. I know how difficult it would be to raise a kid with each condition and would not affirmatively opt to have a child with these, or other, disabilities. Maybe I’m not selfish enough.
But I wonder if a parent should get to select. And, with the advance of bioinformatics, the number of purported options expands continually.