In Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America, anthropologist and feminist Rayna Rapp explores fetal testing and how it has become a routine part of pregnancy care for some portions of the population. Additionally, she discusses the populations likely to use it, and the role and communication of the healthcare provider. Rapp makes an effort for her feminism to be intersectional by capturing not only the well-educated, financially stable, secular white woman in America but by gathering stories from women whose stories are typically not explored – uneducated, economically disadvantaged, middle class, working class, and a racially and ethnically diverse group of women. Rapp’s expertise in the subject started with going through an amniocentesis herself and subsequent termination of the pregnancy upon a diagnosis of Trisomy 21, then diving into the field to tell other women’s stories. Specifically, Rapp argues that the use of prenatal testing and intervention technologies are culturally constituted.
According to Rapp, the topic is especially complicated due to the “intersection of personal pain and national political struggles” (Rapp 1999). This goes beyond what many of us might first think with the pro-choice vs pro-life debate. The discussion also includes healthcare in a country where all members do not have equal access, disability rights, and the right to informed consent.
Rapp goes over the history of the amniocentesis procedure, informing us that it dates back to 1882, predating ultrasound technology, though it was not popularized until 1950 for the purpose of treating Rh disease. The addition of ultrasound technology made the amniocentesis procedure safer and less likely to cause miscarriage. In the 1960s, a similar test known as chorionic villus sampling (CVS) test was developed which allows for women to be tested at the end of the first trimester, though it carries a higher risk of miscarriage as well as possible birth defects. Maternal serum alpha-fetoprotein screening is also now common which can predict neural tube problems and this is also measured in an amniocentesis. One issue, which Rapp addresses, with all of these tests is results are not a definitive diagnosis – but instead, a screening.
One important point which chapter 3 discusses is genetic counselors, which became a certified career in the 20th century. According to Rapp, genetic counselors are built to be neutral. However, their role is inherently not neutral when eliminating technology for fetuses exists. Either way, neutrality is not always good. Some women do not want to be given a choice. Another problem that exists is that genetic counselors usually have no ethnic or cultural diversity training. This buttresses Rapp’s argument that the “hegemony of the scientific model can never be absolute” (Rapp 1999).
There are many reasons that women may or may not want an amniocentesis. Age, education, limitations of the test, the opinion of the father, and family history, as well as previous pregnancy history all, affect a woman’s decision. Experiences of their friends and coworkers can influence them as well. Their cultural and ethnic background may affect it as well, influenced by older women in their family who may not see a need for it or may believe that getting an amniocentesis could possibly influence a pregnant woman to abort. Doubts about the usefulness of the test, considering the limitations of what the test shows and that it does not necessarily show how severe it can be (such as Down Syndrome ranging from mild to severe), may guide a woman away from getting an amniocentesis. Additional reasons against an amniocentesis also vary from fear of miscarriage, discomfort with the procedure, and religious reasons. The number of factors that go into their decision is not limited. However, religious reasons go in both directions. While some may argue that their god would not give them problems they could not handle, others argue that their god gives them solutions for problems. Many women also question whether a decision makes them selfish, worry about the suffering of a fetus – not from the abortion, but the life and quality of it that they have, and the burden that it could place on their family.
Regardless of a woman’s decision, communication between doctors, counselors, and women remains difficult. “Code-switching” between scientific lingo and colloquial language is an issue. Women with more scientific literacy are more likely to get more specific information from their doctor. Answering questions about background and medical history may not make sense to every patient and therefore, their answers may not be as informative. Some women made find the citing of statistics at them to be inconsiderate of their personal situation, and that counselors do not understand their specific concerns. Single mothers and lesbians often feel ostracized in their circumstances due to the stress put on by healthcare professionals to know about a paternal background. With varying reasons, there is a near consensus among women who do get an amniocentesis on a couple of things: anxiety is high during the waiting period between the procedure and nearly all of them are glad they got it after they get the results.
Another point that Rapp makes religious and science are intertwined, not to be considered individually on personal decisions such as an amniocentesis or how to go forward upon a positive diagnosis, and open to interpretation. Although pieces of work such as the Donum Vitae exist, there is no definitive Catholic viewpoint, or Jewish, or any other religion. Texts like these do exist but do not solely dictate and control the decision making of every single member of the religion.
In the latter portion of her book, Rapp begins to take a more personal approach to the subject. Chapter 8 offers an in-depth analysis of analyzing the sample gathered in amniocentesis and her experience working with the lab technicians. In Chapter 9, she discusses the myriad of emotions that women have to deal with upon receiving a positive diagnosis. Although estimates of over 90% exist for women who choose to terminate the fetus after a diagnosis, two groups tend to exist: some knew immediately they would do so, and others went through an extensive decision-making process. All of the women who received one experience severe grief from their loss of the child, likening it to a miscarriage or fetal death more than an abortion. The support these women received after vary, with some being cut off by friends or family, and others receiving their full support. On the other end of the spectrum, Rapp discusses mothers who receive diagnoses upon the birth of their child without having received a prior amniocentesis or other prenatal tests. Many discuss being scared and angry at the beginning, but ultimately loving and being grateful for their child.
Continuing on the note of prenatal testing, the article by Ivry starts off with the anecdote of a Rabbi taking on the moral responsibility of a couple’s decision to terminate in order to relieve them of the agony of the decision. Ivry’s main focus is outsourcing moral responsibility in terms of the prenatal test, diagnosis, and potential termination. Getting the approval of a rabbi gives a message that it is Halachically appropriate. This is often done on a case by case basis, as not all Rabbis feel the same. But rabbis offer something that the doctors cannot in their line of work, ethical judgment. Some are vehemently against it and others permit it in the case of fetal anomalies. This model of outsourcing responsibility offers some peace for pregnant women.
There is an interesting comparison to be drawn between the discussion that Ivry makes of rabbis taking on moral responsibility, and Catholicism, in which Rapp states that Catholic women often experience an extra layer of guilty due to their religion. Religion’s role in the decision-making process is varied and complex, not guaranteed to ease or worsen the woman’s decision.