Unit Five: Cultures of Testing Written by Anna Wachspress

The reading and viewing materials for this week delve into discourse surrounding prenatal testing but through a lens broadened to include much more than just religious influences. Exploring multiple identity characteristics, we learn how various elements of a person’s life experience affect their ethical and moral considerations related to pregnancy. Note: This blog post reviews the book Testing Women, Testing the Fetus and the film The Burden of Knowledge: Moral Dilemmas in Prenatal Testing; I could not locate “Outsourcing Moral Responsibility: The Division of Labor among Religious Experts.”

Rayna Rapp’s Testing Women, Testing the Fetus is a compelling ethnographic study which explores the social impact and cultural meaning of prenatal diagnosis, specifically focusing on the ways that different identity characteristics (race, class, citizenship, education level, family background, among others) affect decisions about amniocentesis. Published in 2000, the book presents a highly comprehensive review and analysis of perspectives on prenatal testing among women, male partners, genetic counselors, lab technicians, and other medical professionals who Rapp engaged with over the course of 15 years. Rapp began her research after a personal experience with prenatal testing which involved a difficult and transformative decision-making process.

Rapp presents her analysis as contributions to three different discussions. The first topic concerns technological transformation of pregnancy, or how the advancement of technology affects pregnancy and reproduction. Secondly, she discusses the intersection of disability rights and reproductive rights and questions the best way to approach prenatal testing so that the two can both be supported. Her final topic concerns scientific literacy in America and the impact of differential understanding of diseases, genetics, and diagnoses in affecting decision-making. In summary, Rapp argues that “the very objects of [biomedical] knowledge—chromosomes, health risks, fetuses—and its technologies of intervention—sonography, chromosome studies, maternal and fetal health—are culturally constituted” (Rapp 13).

The film The Burden of Knowledge: Moral Dilemmas in Prenatal Testing examines the way ethical considerations affect the degree to which individuals support advances in prenatal testing technology. The 54-minute documentary consists of interviews with seven couples who have experience with prenatal testing as well as doctors, counselors, and medical scholars. The film breaks down prenatal testing into the chronological stages of the pregnancy process and relies solely on interviews to communicate information.

Both of these pieces approach understanding the social and cultural impact of prenatal genetic testing holistically and through story-telling. I found this to be a compelling strategy since pregnancy is widely considered to be a private topic in America. Unless an individual has close relatives or friends who are willing to share their experience, little personal information about the experience is readily available. Further, this style encourages readers and viewers to understand that the combination of identity characteristics and the degree to which certain elements of a person’s identity contribute to their morals is so incredibly specific and personal. While trends arise among women of the same race, education level, class, religion, etc., understanding a woman’s viewpoint is highly personal to her specific life experience. I appreciated the holistic approach supported by narratives since it communicates the nuances of prenatal testing and the overwhelming complexity of its reception.

At the end of Rapp’s book, she points out a key limitation which I also considered while reading: the subjects of her research all come from the New York City area. On one hand, this melting-pot city has a vast degree of diversity among its inhabitants, and Rapp successfully incorporates anecdotes from a very diverse group of individuals. On the other hand, the ethnography lacks the perspective of rural America. This may seem scrupulous, but considering the political power that rural America has in controlling reproductive rights, I think their perspective is a vital piece of the full picture. That all said, I find that the discussion of morals and ethics in relation to prenatal testing (as well as pregnancy issues as a whole) are often too simply boiled down to the impact of religion on values. I imagine that if this ethnography explored rural America, the effects of other social and cultural identity elements that this book powerfully explores would have once again been clouded by the effects of religion. I appreciate that this book highlights all of the many other social and cultural factors which affect women’s ethics and morals, so while I think the experience of rural America is important, I think it is meaningful that Rapp excluded it.

As for the film, I found the interview style palatable but doubted the reliability of the participants’ answers. The directors of the film ask couples to discuss a very personal aspect of their lives, and I think it would be very rare for a person to truthfully open up to a camera about such a raw and private experience. Further, the interviewees’ descriptions of their opinions regarding prenatal testing were all told in retrospect, and as Rapp brings up in her book, a person’s ethical and moral considerations at the time of a positive diagnosis versus when they have a child to love and hold are incredibly different. While the film was mind-opening and discussion-provoking, I think observation of couples currently going through testing and diagnosis would provide a more genuine understanding of a woman and her partner’s experience.  

One concept from the film that I found particularly thought-provoking was the idea that pregnancy is a terrible time to begin to learn about disability because women are forced to try to understand their values and ethics during a time when they are physically and emotionally drained. While it would be nice to walk through life with a completely solid understanding of one’s morals, I think this is rare, and for most women trying to conceive a baby (let alone women who conceive accidentally), I doubt this is a consideration on their mind. This left me wondering what non-religious, non-familial outlets are available to women seeking to gain ethical coaching during this difficult time? Since genetic counselors are taught to counsel through a non-directive approach, where can women turn for guidance? Is this why so many people rely on religious teachings since it’s such a concrete and obvious direction to turn to for advice?

Finally, I would like to know how the rest of the class digested Rapp’s assertion that “contemporary pregnant women have become our moral philosophers of the private” (Rapp 306). While on one hand, I think the claim empowers women and underscores the heavy weight that they are under to make moral choices, I also think this evaluation unfairly disregards the impact that male partners and other family members have on pregnant women’s decisions.

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