This week’s content in both, Rayna Rapp’s Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America and The Burden of Knowledge: Moral Dilemmas in Prenatal Testing, was abundant in the discussion of the ethical, cultural, economic, and religious influences surrounding prenatal technologies (e.g. amniocentesis). In Rapp’s book, she dives into a plethora of topics such as the history, methodology, and development of amniocentesis in America, the lived experience of pregnant women as they undergo testing, await results, and decide whether to accept or reject their pregnancy, their partners and families, risks, medical communications, misconceptions, factors influencing women’s refusal to receive amniocentesis or abortion, genetic counselors and the challenges and responsibilities of their professions, and much more. At the start of every chapter, Rapp intentionally begins with a snippet of an interview with a woman describing her experience pertaining to the specific focus of that particular chapter. In doing so, she illustrates the importance of incorporating lived experience and personal stories into her research.
In Chapters 1-2, Rapp outlines her methodologies and goals for the book. She states the need for research within this specific field of prenatal testing and amniocentesis, and the broader field of biomedical sciences as a cultural object. She walks through the history and development of topics including abortion, eugenetics, geneticization and how prenatal diagnostic services have slowly emerged in American medical systems. In Chapter 3, this discussion is continued in the emergence of genetic counseling as a profession. A point she made that I found interesting was how many counselors “feel that they can keep up with the science, but were never given the tools to keep up with the cultural differences they now encounter” (Rapp 58). This reveals a glaring blind spot in the field of counseling, that if paid attention to, can significantly improve the caliber of prenatal care that is provided for women from diverse cultural backgrounds. Rapp then walks through the various range of conceptions and misconceptions surrounding prenatal testing between women from diverse backgrounds in Chapter 4. These misconceptions include, but are not limited to, mother-child fusion especially within Puerto Rican and Dominican culture, higher probability of sickle-cell anemia within African American culture, the belief that chromosomal anomalies lead to homosexuality, and more. One additional factor that influences the extent of these notions is the genetic counselor’s ability to convey meaning across linguistic boundaries. This kind of “ language barrier” that is encountered often “may eclipse a complex imbrication through which transnational migration, racial prejudice, religious beliefs, gender practices and assumptions, and scientific worldviews may all be uneasily stitched together” (Rapp 82). Rapp illustrates that devoting attention to these cultural aspects is not only a complex matter, but it is also crucial to improving the field of genetic counseling.
Chapter 5 delved into “the problem of scientific literacy in a highly stratified society” (Rapp 113) as well as the emotions and experience of the woman as she anticipates amniocentesis. Something I found very interesting was that “women without privileged educational backgrounds were likely to remember and to mention specific media sources when I asked about their first encounters with this technology” (Rapp 115). This relationship with media illustrates the importance and weight of media as a news source especially for people from lower economic classes. Given the impact it has in reaching the lay public, further exploring the intersection between media and scientific literacy would be very fruitful. Additionally, Rapp’s interview with Merced Rodriguez discussed how Rodriguez was distraught and crying when deciding to get the amniocentesis test; however, she decided to go to church for an hour and then felt better. This demonstrates the power of religion in providing emotional and mental relief amidst an emotionally turbulent time. It would be interesting to consider how spiritual or religious aspects may be incorporated into genetic counseling in order to provide a more holistic, effective approach. Chapter 6 explores the gender power dynamics between pregnant women and their partners, the complexity of the waiting period for results of prenatal testing (especially its associated anxiety), and different cultural, religious, and economic influences towards attitudes toward childhood disability and abortion,and family history. Chapter 7 delves into the balance between the profound influence of strong religious affiliations, kinship, or other social support structures and the influence of accessibility to prenatal testing information, education, and socioeconomic factors over women’s decision to accept or reject a pregnancy which transitions into the detail of the official procedures and methodologies of cytogenetic laboratories, including the technicians, technologists, and geneticists within them in Chapter 8. In Chapter 9, Rapp explores the web of factors involved in deciding whether to continue or end a pregnancy.
As we have discussed in previous classes, the concept of kinship has many layers and dimensions. Chapter 10 challenged the concept of kinship through the introduction of the idea of kinship of affliction where this was “the notion that people with Down syndrome could be removed from the kinship nexus that was theirs ‘by birth’ and relocated inside either own separate tribe” (Rapp 277). I found this to be disturbing as this definition stemmed in part from the medical use of the term “simian” and its devolutionary implication that people with Down syndrome more closely resembled primates rather than humans. This lens “further segregates them from people without this characteristic, recategorizing them as closer to the nonhuman primates than to their immediate human kin” (Rapp 295). This led into discussion on how religious beliefs and practices condition acceptance as well as the importance of forming new communities. Lastly, Chapter 11 discussed areas she has yet to explore but would like to (e.g. basic research scientists whose experiments pioneer the field of gene hunting and mapping), deconstructs her own point of departure as a former abortion counselor, importance of media and caliber of scientific literacy, as well as her own personal, lived experience with abortion of XYLO. The movie, The Burden of Knowledge: Moral Dilemmas in Prenatal Testing, walks through the complex layers that surround the MSAFP screening test, amniocentesis, genetic counseling and several women’s personal experience with these (emotions associated with deciding to screen, receiving counseling, waiting for results, receiving the results, decision to have/not have abortion). Through interviews with multiple women, the movie explores their experience throughout the whole process of amniocentesis, acceptance or rejection of the pregnancy, and the complex thought that feeds into each decision. Highlighted within the movie was a deep flaw in the medical system as seen through the behavior of the medical personnel. One woman recounted the aggressive push of her genetic counselor to abort her fetus upon discovering that her baby would have Down syndrome. This negativity toward Down syndrome is not only problematic, but the counselor’s persistent vocalization and assertion of this onto the mother is unacceptable. My question is, from rich sources like Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America and The Burden of Knowledge: Moral Dilemmas in Prenatal Testing, how can genetic counseling in America be elevated to incorporate the complex entanglement of religious, cultural, socioeconomic considerations in practice and approach? How can the American medical system be mindful of the delicacy surrounding each patient and their context?
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Hi Jane,
Great blog summarizing and analyzing the readings (and film) from the past couple of weeks! I think the topic of prenatal testing is an interesting one. It goes hand in hand with so many other controversial topics, including assisted reproductive technologies and abortion. I like how you included the quote from chapter 3 of Rapp’s book regarding the gap in genetic counselors’ knowledge of cultural differences and their ability to handle those. The field of medical anthropology focuses so much on ensuring that doctors are able to bridge the gap between medicine and culture to provide better care for patients, yet this field definitely needs to extend to genetic counseling. I also like how you mentioned the role that religion plays in providing emotional and mental relief amidst an emotionally turbulent time. I definitely agree with this but I also think that religion can sometimes amplify the internal conflict some of these women might be facing. For example, if a woman would like to go through with terminating her pregnancy after a certain finding from a genetic test, she would be morally conflicted because her religion may forbid her from doing so. I think that the film The Burden of Knowledge: Moral Dilemmas in Prenatal Testing was particularly interesting because the accounts of the different women varied greatly. Some prepared for a child with a disability while others agonized over the decision to terminate the pregnancy. The idea that there needed to be a reasonable motive behind the termination was also a common theme. Some had their marriage in mind and others had their other children in mind or even the child itself in mind. There is much to delve into when it comes to this topic. To answer your final question, I think that women who are in search of a genetic counselor should try to find one from a similar cultural background as theirs. It might be easier said than done but I think that a genetic counselor has a big sway on a couple’s decision regarding the future of their pregnancy and having someone from a similar culture could help.
Hi Jane,
You wrote a very strong summary of the readings and movies from this week, and I definitely shared similar insights as you while reading and watching the sources. I found this week’s assignment interesting because I learned so much about the myriad of factors that influence a woman’s decision to undergo amniocentesis which expanded my perspective on the complexity of prenatal testing and bioethics. the sources, especially the film which showed interviews of many women and their responses to prenatal testing, highlighted how diverse each women’s process and values are. It made me consider your question of how the American medical system can be mindful of each patient and their context? I definitely believe that all professions in the medical field, such as genetic counselors, should have ethnic and cultural diversity training, and that the medical world should continue promoting diversity all around. the more diversity there are in hospitals, the more patients will feel comfortable sharing their perspectives, fear, desires, etc, with a doctor who is familiarised with their background and contexts. Furthermore, by promoting greater diversity, there will be a lower risk of misinformation and lack of transparency communicated between the doctor and patient, which are factors that influence a women’s choice to do prenatal testing, amniocentesis, abortion, etc.
Hi Jane,
Really great summary of Rayna Rapp’s book and the topics covered in each chapter. You really get to the point that genetic counseling and the ethical issues of amniocentesis are very complex and medical professionals have overlooked the roles that socioeconomic background, religion, and ethnicity play in a family’s decision to go forward with this invasive procedure. I also found the intersection of religion and state governance really interesting throughout Rapp’s book. I don’t know if anyone else did this, but I kept on trying to put myself in the shoes of some of the women throughout the book and documentary. As a Jewish American woman, do I go through prenatal testing? How does my ethnic and religious background impact the decision I make?
To attempt to answer your last question, I think it’s a matter of medical professionals/genetic counselors taking a more anthropological perspective. Right now I am in Medical Anthropology with Dr. Brown, who has already taught us a lot about the importance of patient context and background. It’s not just a matter of diagnosing a patient correctly and providing treatment, it’s a matter of what treatments will work for this specific individual based on context. If genetic counselors and the American medical system shift to this more holistic approach, I think trust and transparency between doctor and patient would significantly improve.
Hi Jane,
Your blog post was very thoughtful and you did a great job analyzing the reading and film for this week. I found it particularly insightful because I knew very little about what amniocentesis was prior to reading and watching the material, and this put into perspective how challenging it must be for women to learn about this procedure that has many complex cultural and medical implications entangled within the test. You mentioned a blind spot in prenatal counseling to be that the counselors are not taught the cultural complexity of prenatal testing and abortion, thus improved training in this area could significantly improve the caliber of prenatal care provided for women. I agree with your statement, given that this topic of discussion is heavily tied in with cultural beliefs, individual beliefs, as well as societal beliefs, which makes it such a tricky topic to navigate. The film mentioned that women often learn about disability for the first time during their pregnancies, and how jarring that experience can be. To add to your question of how genetic counseling can be elevated in America to accommodate for women coming from all backgrounds, I think a step in the right direction could look like recruiting counselors from various countries and cultural backgrounds, who can speak varying languages and have experienced the culture of the women they are counseling. Especially in the context of women who have immigrated to the US and do not view the States as home, having counselors who share the same cultural background could be very comforting during the very difficult circumstances they are experiencing. I can see that there are many other factors that prevent us from finding a simple solution to your question given the complexity of the issue, but I think knowing that such issues exist and thinking of possible ways we can approach it is a big step in itself.