Testing Women, Testing the Fetus : The Social Impact of Amniocentesis in America by Rayna Rapp is a book rich in anthropological research, documented participant observation, personal accounts of pregnant women and fathers of fetuses, and analysis centered around amniocentesis. Rayna explores the social impact of amniocentesis through 11 chapters, beginning with the methodology and routinization of prenatal diagnosis and concluding, appropriately, with a hopeful concept of endings serving as new beginnings. Rapp does an incredible job of informing the reader of the history of prenatal diagnosis and background on amniocentesis, which I believe is paramount to understanding the racial, cultural, and socioeconomic underpinnings of prenatal diagnosis’ impact on expecting mothers. Through the educational foundation she sets with readers, Rapp connects amniocentesis with an array of questions and topics; ethics, ableism, religion, cultural and ethnic background, and maternal responsibility are part of the many constructs that Rapp investigates.
Ethics plays a large role in Rayna Rapp’s critique of the development of prenatal diagnosis and, through her third chapter on the communication of risk, sheds light on the interconnectedness of eugenics and genetic counseling. The rise of eugenicists, scientists who study the discipline of improving the human population through selective breeding, largely brought to life the field of genetic counseling; the avenue through which amniocentesis results are communicated. Rapp discusses the concept of “positive” eugenics vs “negative” eugenics, meaning sexual reproduction among people with desired traits versus people with undesired traits. The potential ethical ramifications of this field of study seem to bleed over into the medical practice of amniocentesis and the field of genetic counseling. “Positive” and “Negative” eugenics come with an implicit assumption of the rules which determine certain humans superior to others. Though genetic counselors specialize in neutrality in working with peoples of differing backgrounds and with various ideas on the science of reproduction and pregnancy, amniocentesis and the communication of its results can come with implicit laws of what is “good” and “bad” that may not align with patient’s own beliefs, especially if communicated with any amount of bias or hidden agenda by a medical professional. The idea of theological or divine determinism, for example, is a reason for many women to not seek abortion when given the news of a fetus developing with disability.
In the chapter titled “The Disabled Fetal Imaginary”, many direct quotes from women and men suggest the immensity of misinformation that exists around disability and fetus development. There are many interviewees who describe Down’s syndrome as something entirely unlike the realities of Down’s syndrome. This chapter highlights the importance of communication throughout the pregnancy process and after the discovery of genetic and developmental disorders. Rayna attributes race and socioeconomic class as two of the primary factors in determining a patient’s response to the results of amniocentesis. She posits the likelihood of similar upbringing, educational background and cultural disposition between white patients and genetic counselors compared to recently relocated Hispanics or peoples struggling with a language barrier. On observing an interaction of a male biostatistician with a female genetic counselor, Rapp describes, “Watching such interactions, it was hard not to make two judgments: first, that male professional expertise sits uncomfortably in a room with less-credentialed but more specialized female professionalism; and second, that male anxiety is commonly and acceptably expressed through rationalized hostility.” (109) Her feminist voice certainly surfaces through this comment, as does her opinion on the challenges of genetic counselors in offering the best guidance and information to their patients. Rapp does not dive into the topic of male domination in the medical industry. Even in the subject of pregnancy and reproduction, male scientists and thought-leaders have dominated the path for women’s reproductive health. I would be so curious to know Rayna’s thoughts on the male bias of women’s reproductive health care and how it has impacted the resources, information, and support available to women during the whole pregnancy process. Perhaps it is too large of a subject that might complicate Rapp’s writing and deflect from the center of her study.
“No one enters the decision to undergo amniocentesis trivially; genetic counseling is too sobering an experience to permit a casual use of this technology by any of the women among whom I have worked.” (Rapp, 307) Rayna articulates a question that was brought up in class; how and when do we determine a fetus to be a human? And how do our morals bend when the reality our future life deviates so far from our expectation? Described in Tsipy Ivory’s article “Outsourcing Moral Responsibility: the Division of Labor among Religious Experts”, “FLOH’s rabbis position themselves as medical decisors” (Ivory, 10) which is in direct opposition to the work of a genetic counselor. According to Ivy, rabbis are in consensus about the conditions in which an abortion is permissible following the diagnosis of fetal anomaly. What lacks from the offices of genetic counselors that rabbis offer in bounty is ethical judgement. Though Rapp emphasizes the importance of remaining neutral as a health care professional, I wonder how often this leaves women of weak or no religious affiliation with a heightened sense of moral dilemma, perpetuating the issue of defaulted maternal responsibility in pregnancy.