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.
I want to thank all of the posters for this unit on their responses.
Rayna Rapp’s book highlighted the multifaceted topic of amniocentesis in a very informative manner; she addresses the misconceptions, communication between patients and doctors, and even the history of genetic counseling. Though informative and rife with valid analysis, Rapp does take a very critical feminist angle when criticizing, such as praising the merit of eugenics while still maintaining the right of a woman to decide what to do with her fetus. She does criticize the lack of demographic representation among those who attend medical conferences alongside her, citing that a majority of them were “old, white men.” Rapp continues to state she wants more diversity in the field rather than the current “experts.”
I found her analysis of codeswitching to be particularly interesting. The practitioners were swapping their language usage to what made sense to the patient and while I feel it might not always be 100% accurate, it is important to ensure the patient understands what is going on rather than completely accurate scientific knowledge. Ideally there would be a balance, but the layman likely lacks a significant amount of contextual knowledge to give a proper response full understanding.
The chapter regarding misconceptions was notable due to how much cultural interpretation intertwines with medical understanding. From the middle class white couple who decided to “abort” their child “if he can’t be president” to the Spanish-speaking community’s tendency to have “beliefs that a daughter’s fertility affects her mother’s,” it’s an insightful look into how certain populations interpret what does and does not adhere to societal and cultural standards. Female accountability is a large aspect of this chapter. I found the concept fascinating, as it was new to me. Though men are the “seed” at which pregnancy begins, mothers are responsible for nurturing the child and bringing it into fruition. Religion was often attached to a woman’s ability to reproduce.
This connects with Tsipy Ivry’s “Outsourcing Moral Responsibility” essay quite well. Rabbi Cohen felt it necessary to bear the burden of the moral decision on his shoulders rather than let the couple, in particular the mother, feel regret. However, not all rabbis choose to opt to bear such a choice upon their own shoulders. Rabbis often greatly differ from person to person with their choices, and while some would rule a decision Halachic, not all would. How one chooses the “right” rabbi is ambiguous, and the network of rabbis in FLOH has become both a boon and a bane. While there are many rabbis working together to offer their views, they cannot always agree on a moral decision, only complicating matters further. The concept of moral relief in pregnancy termination with the advent of amniocentesis is an interesting one, but begs the question to what burdens should be shifted, and to what extent.
Thanks for such a good response! I felt like this sentence really summed up the main point of the reading and how it applies to this class: “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.” This sentence alone demonstrates how the amniocentesis is not a stand-alone issue. Each of these other questions and topics must be considered to understand a person’s view on the issue and how to help them make the best decision when it comes to the procedure.
I like how you discussed Rabbi Cohen’s position at the end of your response. It demonstrates that the burden of amniocentesis and abortions are not necessarily just on the mother. Whoever helps the mother to make her decision shares some of the burden and perhaps in certain situations, taking the burden away from the mother helps with the grief that comes with it. Another view, however, could be that this was a burden given to the mother and it is her job to carry it through life. Many Christians might argue that God would not give them something they could not handle. Thus, a Christian view of this situation could be that it is not the Rabbi’s job to take the burden but instead to help the mother figure out how to handle it.
I wanted to expand on the claim that socioeconomic status being a primary factor in determining the patients’ results of amniocentesis. Rapp writes, “women who use amniocentesis must also articulate their understandings of the ethical impact of a positive diagnosis on themselves, other family members, and the fetus, while describing the limits of how they want to live. These two tasks—an assessment of mother a disabled child and the impact of such a child’s existence on her most intimate social relations—are deeply intertwined,”(Rapp, 131). Because there are costs associated with raising children with certain ailments, it stands to reason that people may avoid adding a financial burden onto a list of expenses that they are already struggling to deal with. While a wealthier family may be able to accept this burden and may elect to carry the fetus to term, others are unable to do so. People who belong to poorer socioeconomic status are less able to accept these financial burdens by carrying a fetus that receives a “positive diagnosis” to term.
Rapp takes into account the social burden related to a “positive diagnosis.” I would assume that socioeconomic status would not be an indicator of how willing the mother is to deal with the impact of a disabled child on her most intimate social relations. Rapp provides accounts of people indicating that they would not carry a child with Down Syndrome to term for social reasons. These accounts appear to come from people of a more wealthy background, but from both Black and white parents. One account states, “All of the sharing things you want to do, the things you want to share with a child—that, to me, is the essence of being a father. There would be a big void that I would feel,”(Rapp 133). This indicates that the reason he would want to abort the fetus is that his familial relationship with the child would not be legitimate. He would not get to have what he considers a typical relationship that a father should have with his child because it would be missing the essential part of being a teacher to the child. Thus he is driven by his expectation of a normal father-child relationship to abort the child. The other accounts express similar dissatisfaction with a Down Syndrome child’s social shortcomings.
This raises a question for me. If the people unable to afford a disabled child use the fiscal cost as a justification, and the people who are able to afford a disabled child use social cost as a justification, does either party make a more viable argument for the justification of terminating a fetus after receiving a “positive diagnosis?”
Thank you for the post filled with interpretation and engagement with the readings! I think you bring up a great question at the end of your post regarding the moral burden that non-religious women might hold and how it could be different from religious women. I wondered the same idea while reading, and I wanted to complicated it further: what if we consider one’s faith in the genetic counselor’s recommendation to be a form of religious or spiritual faith? If counselors were not expected to be unbiased, and instead could be consulted for their medical opinion in terms of health risks to the mother and the fetus based on prenatal testing and offer their medical recommendation, couldn’t this be interpreted as outsourcing moral responsibility to a healthcare professional with rich experience in this field? Can trusting a healthcare professional and their recommendation relieve this moral dilemma for women who have little or no religious affiliation?
Thank you for a great post, Fiona! I liked that you pointed out Rapp’s feminist views on women’s reproductive health and how she avoids discussing male dominance in medicine. I would also like to hear her thoughts on male bias of women’s health and learn more about how such dominance has influenced major decision-making processes. Although genetic counselors are to maintain neutrality, I wonder how different the interactions would be if the counselor was male versus female? Since a female counselor can “understand” what the woman is going through, do we think that her guidance would be more bias and influential in guiding patients to choose a procedure?
Hi everyone! Thanks for a great post, and for the thought-provoking comments too. I wanted to respond to Fiona’s final question regarding the potential for heightened moral dilemmas in nonreligious women. My initial reaction was that women who follow a specific religious code might struggle with the idea of abortion or amniocentesis more because of religious rulings about the issue that label it as a “sin” or something along those lines. On top of the woman’s personal feelings there is another layer of imposed religious feelings that dictate how she is supposed to feel or act regarding the decision. Reading the article about Rabbi Cohen demonstrated the powerful responsibility that religious leaders have in guiding moral decisions, as well as their ability to serve as a conduit through which God’s word can be interpreted with authority. I am unsure if this would be able to fully relieve any moral guilt a woman is experiencing, or if the religious pressure to feel a certain way would be too powerful. I’d be interested to hear more about how this plays out long term in women who sought religious guidance and those who did not.
Hi Fiona,
Thanks for a thought-provoking post. I really appreciate your closing remarks, as they are ones that I have been pondering since reading the book and article for this week as well as previous blog postings. We’ve discussed ideas of kinship and their impact on defining societal norms and methods through which we can understand human relationships and behavior. You question the neutrality involved in genetic counseling and compare it to heavily-biased views of religious authorities. Another aspect available in situations where people seek religious authorities and rulings is a system of kinship. Members of religious communities may experience affirmations from members in their decisions to undergo or not undergo prenatal testing, validating their actions and providing a sense of security in doing so. Rapp explains that kinship also, however, may create standards to which members of communities must conform (Rapp 2004, 89). Certain communities may criticize people with mental or physical disabilities, influencing decisions made after prenatal diagnoses of certain conditions. Could dividing moral labor roles in a population find a medium between these two extremes? If so, what might that look like?
Thank you for your post. I liked the detail that you went into. I think one intriguing thing I saw from some of the comments was the focus on only woman in this decision making process. I think it would be intriguing to see how man could possibly sway different decisions than a woman could. Moving to another point, I wanted to ask if there should be a separation between medical prognosis and advice versus moral advice. I believe that medical practice no matter what religion you are should solely be based on the betterment of the patient. I think any other way would be completely unfair. Is there not a way that healthcare providers could be better vetted to ensure that they could be empathetic to the patients’ religions and beliefs, but offer solutions that are only tailored to betterment of the patients health?
Thanks Fiona for your detailed response to the book and article! I had very similar thoughts regarding the relationship between religion and dismissing the “moral sense of dilemma” that you discuss toward the end of your blog post. I actually even briefly talked about on an earlier blog post response. To expand on your idea, in order to eliminate moral ambiguity, we make the assumption that religious individuals fully assume their beliefs are correct. This sounds generally intuitive; members of a belief system believe their religion, however, anecdotally, I see that most people still question some aspects their religion. If that is true, then I don’t see as large of a difference between religious and secular counseling. If you go to a religious authority and they tell you their beliefs, only if you believe fully in that religion will this provide full elimination of moral ambiguity.
Great post, Fiona! You did an excellent job of summarizing the reading, as well as laying out some central themes. Your discussion of positive and negative eugenics drove home some important ideas that we have to take into account when discussing genetic counseling and subjects we might be tempted to label as “purely scientific”: nothing is without moral consequence. Every scientific and medical development and action is surrounded by questions of ethics; “can it be done?” will and should always be followed by “should it be done?” In the same way, scientists and doctors cannot completely distance themselves from their own moral and possibly religious bias.
Your question “how do our morals bend when the reality of future life deviates so far from our expectation?” was a striking one, and I thought it really captured the dilemma that people – parents, doctors, and religious leaders alike – are faced with when contemplating genetic testing and potential termination of a pregnancy. We have certain expectations when it comes to the children that we create – we automatically assume they will be, for lack of a better word, “normal”. When genetic testing allows us to see that a child may not be as normal as expected, there is always a potential for “bending morals”, as you said. It is interesting to see how morals and religious beliefs are bent to work in reaction to or in spite of determined fetal anomalies.
Thank you so much for these thoughtful points. One thing I really liked that you mentioned was about the misinformation that surrounds Down’s Syndrome. While reading both Rapp’s book and Ivry’s article, I kept coming back to the idea that these religious figures conveyed such a negative view of Down’s and “mental retardation.” The common trend seemed to be that termination of a pregnancy was never as surefire of a decision unless and until the diagnosis of mental retardation came about. This was seen as too debilitating for the family and child, and termination was the best option. I definitely agree with the point that proper communication about the realities and facts about mental health illnesses is necessary when making these kinds of decisions, as every prospective parent should know both sides of the prognosis. These ideas perpetuate the negative stigma surrounding those with Down’s, for example, and does the society much more harm than good. While I do understand that these are religious figures acting as moral decisors, there should be more discussion on the realities and even positive aspects of individuals with genetic abnormalities that are not life-threatening.
Hi Fiona,
Great job on the post this week. I felt that you did a wonderful job interpreting and articulating the author’s thoughts. I completely agree that the socioeconomic status of the patient plays a major role in the decision of amniocentesis. I feel that differences in upbringing and education in particular, also fuel the codeswitching utilized by doctors to suit the status of each patient. In response to Paige’s question, I feel that a situation similar to the Vietnamese health care views would occur. If we were to trust the doctors with these ethical decisions, I feel they would always air on the side of caution rather than allow suffering. Additionally, by trusting the doctors to making the decision, I feel that the moral responsibility of the mother is thus relieved. The doctor would then be taking a dual role of both the doctor and the rabbi in Jewish contexts as portrayed by Rabbi Cohen. I would not like to see this happen as further moral responsibility is thus placed on the doctor. I would rather have a situation where moral obligation is placed on a third party as portrayed by Ivory’s work.
Thank you for your post. Irvy’s discussion of moral outsourcing particularly interested me; people have a tendency to view themselves as moral, good people. For this reason, in tough situations such as having your fetus test positive for Down’s Syndrome, I think Ivry’s argument that moral outsourcing could take a burden off of mothers is unique. After spending a lot of time in America, where we tend to emphasize freedom and choice, I had never considered the idea that having someone else make the decision for a person could make his or her life easier. Although this is a much simpler example, it made me think of a common instance: choosing where to go to dinner with friends. People may feel nervous in such a situation where they can potentially let others down if they suggest a restaurant that others may not like, so they feel relieved when one person in the group makes the decision for the group.
“Code Switching” is also an interesting case. Clear communication between healthcare professionals and patients is key, especially in fields such as OB-GYN, where fetuses may potentially be involved. I think it is important that physicians make a push to become more effective at communicating both complex concepts and having difficult conversations since it is a critically important part of the job. Courses in medical school and frequent workshops could be helpful in ensuring that men and women from all walks of life can easily understand healthcare professionals.
I liked your choice of quote near the end of your blog post too. It was a good choice as it conveys the gravity of the choice for women to undergo amniocentesis.
Hi Fiona,
This is a great post! I loved your interpretation of the readings through the framework of eugenics and how when understanding prenatal testing and intervention technologies it is important to understand the moral significance. You bring up the question of how women with weak or no religious affiliation but with a heightened sense of a moral dilemma, perpetuation the issue of maternal responsibility. When making large decisions, most women tend to fall back on religious and moral values. If falling back on religious values, many women tend to take into account God’s will or wishes when deciding to keep or terminate a pregnancy. But another aspect women must take into consideration is how keeping a baby would “deviate far from expectation”. These readings definitely show the importance counseling or other outside factors influence how women must make these moral decisions.
Fiona, this was a great post regarding Rapp’s work, and I enjoyed your summary of the affects that one’s socioeconomic standing has on their interpretation of doctoral news. In your post you state that, “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.” I find this to be quite true, as it’s so immensely difficult to prepare oneself for the obstacles that would arise moving forward after a couple finds out that their child has Down’s syndrome; however, I do believe that different groups of people would interpret this news differently. As Tom stated in his comment, there are fiscal responsibilities that come with a child having Down’s syndrome, and in short, some families simply aren’t able to pay those expenses on top of their current ones. In a perfect world, all families would be willing to accept whatever deficiencies their child might have, but there are socially constructed expectations that have arisen in our society, and one instance stood out to me in particular on page 133. Rapp states, “All of the sharing things you want to do, the things you want to share with a child—that, to me, is the essence of being a father. There would be a big void that I would feel”. In this example, the father simply can’t come to grips with not having the “normal” father-son dynamic that most men dream of as they grow older. Unfortunately, there are various adversities that come up in our lives, and I would like to think that most people would put life before any other expense or obstacle that might interfere.
Fiona,
I very much appreciate your response and personally found that the areas of focus that you delved into were particularly interesting takeaways from the readings this week. Beginning with your discussion of ethics and eugenics, this is not a topic that we have had the chance to discuss at length in class yet you articulated it well. To me, this ethical question is at the crux of the discussion of ART: what does it mean for humans to not only decide what animals live and die but also to systematically decide which humans even get a chance at life to begin with and which do not? Your discussion of gender is pertinent as well, as it ties nicely with our discussion of who has the right to make judgements and determinations about ART. Who is truly the expert? Is it the doctor? Ethicist? The individual making the decision? I believe that Rapp argues that it is not one individual deciding what is best for many, but that when figuring out issues as big as, say, amniocentesis, we must turn to many practical voices rather than few experts. This is exactly the thought in mind that she has when conducting her ethnography and preparing her book. Thank you for deriving the important points from the reading and clearly relating them to the themes of our class.
Hi Fiona,
Thanks for the blogpost – I really enjoyed reading your thoughts as well as everyone else’s comments. Someone commented that people should take on the assumption that the religious beliefs of individuals are “correct” to properly address moral ambiguity. In your post, you talked about tension between male biostatistician and female patients. You bring in socioeconomics, race, and religion essentially getting at the idea of identity. It is certainly can be difficult to cater to different patient with intersectional identities, especially if it an identity that is not of your own. These conversations around ‘what is best for the patient’ reminded me of Atul Gawande, an American health care professional who wrote about how to treat people at the end of life. He suggests asking patients the following five questions:
1. What is your understanding of where you are and of your illness?
2. Your fears or worries for the future
3. Your goals and priorities
4. What outcomes are unacceptable to you? What are you willing to sacrifice and not?
And later,
5. What would a good day look like?
I believe some of these questions are relevant to prenatal testing and decisions that come of situations such as the positive diagnoses you wrote about. If a mother finds that she is pregnant with an unborn child, one could ask her what her understanding of her situation is, what she is worried about for the future, what her goals and priorities are, and what outcomes would be unacceptable or acceptable for her. Through questioning, we might be able to address the various justifications and needs that different mothers might have.
Fiona,
Thank you for your thoughtful blog response. I really enjoyed reading it and appreciated the points you raised concern to. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America truly opened my eyes to the unique mindset that accompanies pregnancy and its powerful social impacts. Furthermore, the whole notion of birth defects is quite scary and it was interesting and comforting to learn about amniocentesis. I agree with you in the sense that amniocentesis was paramount to mentally grasping the racial, cultural and socioeconomic effects on expecting mothers in society and how they were treated. I also think it is essential to understand these effects, as well as the negative and positive experiences that resulted from such a concept.
Eugenics and genetic counseling is such a groundbreaking science, yet although it is a blessing it can also be a curse. I enjoyed reading about Rapp’s critique of the risk of communication and truly could envision how scary it could be to be pregnant with a child and learn about a deformity or a high risk of such a situation. I don’t know what I would do and can appreciate both sides of the spectrum in regards to people who would terminate the pregnancy and people who would choose to preserve the life. While I initially assumed this would be the negative side of eugenics, I completely overlooked the underlying tones of genocide that could potentially result from eugenic science. Eugenics is such a controversial science because of these two radically different lenses it can be viewed in, and it truly is a shame such a powerful and potentially life changing medicine has such controversy clouding it due to the negative ethics that accompany the field.