Cultures of Testing

In Testing women, testing the fetus, anthropologist Rayna Rapp draws on her personal experience with amniocentesis, when she learned that she was pregnant with a fetus which had Down’s syndrome. She then decided to study prenatal diagnosis and the patients’ feelings towards it. She finds failures within communication between healthcare providers and patients to be unavoidable. This is because she claims that though non-directive counseling aims to be unbiased, it fails to do so because practitioners cannot truly be completely objective. However, she does concede that it is also made difficult by the fact that patients’ beliefs are so diverse and complex that they can’t be fully understood. What I found impressive with her work was that she was careful to keep in mind the differences in race, religion, class, etc. throughout her investigation and was cognizant of the effects that this could have.

More intriguing to me was Outsourcing Moral Responsibility, in which I found it interesting how Tsipy Ivry and Elly Teman begin by telling a story about a Rabbinic expert on Jewish law, Rabbi Cohen, and how he handled Jewish laws and ethical considerations while offering a couple counsel on termination of an abnormal fetus. Rabbi Cohen decides that the termination is allowed and puts the couple at ease by taking the moral responsibility on himself. Ivry and Teman draw on this to inquire about the transfer of this moral responsibility. More specifically, the division of moral labor when counseling on reproductive issues. There is a lot of specialization which occurs, dividing the specific kinds of labor so that they are enacted by the proper specialists. They use outsourcing as a metaphor for the transmission of moral responsibility. They identify different strategies for dealing with moments of moral breakdown. When studying American women, who were less likely to share their decision-making process with others, one strategy was that of “non-directiveness”, which can entail genetic counseling, which allows individuals to understand the genetic information without offering any straightforward moral interpretations. In another study done on Vietnamese women, it was found that they desired to share their moral burdens with extended family, and the care they received included explicit directions for decision-making. In the case of Jewish women, they were found to request the advice of a rabbi, who in turn would begin a systematic procedure of dividing moral labors and burdens with other specialists in order to come to a conclusion. The message is that there is a Halachically-appropriate way out of an unbearable post-diagnostic decision because the diversity of rabbinic opinions can be activated…” (Ivry and Teman 11). This was surprising to me because more often than not, ethical decisions, especially about pregnancy, are often made more difficult when they try to go hand-in-hand with religion. However, we can consitently see that experts dividing the moral burden with their consultees seems to help mental health long-term. However, even Ivry and Teman acknowledge that “…even a successful division of moral labor cannot promise exemption from concomitant moral burdens…” (Ivry and Teman 24).


15 Replies to “Cultures of Testing”

  1. Hi Abhinay, Thanks for the post and commentary on the readings. As pointed out, both of the readings explain the dynamic of decision making with the help of professionals though personal examples. The examples provides in the reading by Rapp not only discusses her own personal experience with testing and fetal termination but also the experiences of a wide variety of women. The reading by Irvy also discusses the experiences of ultra orthodox jews and orthodox jews. The wide array of viewpoints offers insight on how different people, even within the same identity category can vary. Furthermore, the differences between identity groups in the decision making process comes to light and underlines important factors such as religion, economic status, race, education, and moral conciousness.
    A parallel between the two readings that I thought was interesting was how the advice of experts on reproductive testing/issues compared. The reading by Rapp touches on the role of genetic counselors in the decision making process and how although they try to remain neutral during the process, it almost never happens due to a number of factors including cultural diversity and the subjective nature of humans, The reading by Ivy also explains how in the decision making process facilitated by FLOH, rabbis will get numerous opinions from medical professionals and other rabbis in order to make the final decision more objective. However, because of the implications of such decisions, the process is morally strenuous and makes opinions inevitably biased.

  2. I enjoyed reading your post of this week’s readings! One thought that came to mind from your response is the consideration of how Rapp would read the transfer of moral outsourcing that you discuss as central to Irvy and Teman’s paper. While Rapp addresses the shortcomings of inherently biased healthcare professional counseling, I found her discussion of patients’ religious backgrounds to be incredibly important to your commentary on moral outsourcing. She discusses the discursive and intertwined relationship of science and religion and the social and material resources that religion offers people and their importance to her field of study (154).

    Rapp mentions how her descriptions often echoed religious stereotypes, but then reflects on the fact that many had used religious beliefs or upbringings in their discussion of the use of prenatal testing. They simply cannot be separated, so why does science have to be presented without a bias if religion does not? With this angle, I cannot help but read the concept of moral outsourcing to religious figures (even if they offer the moral burden like we see in Ivry and Teman’s work) also as a form of bias in the world of genetic counseling and informed decision making.

    While the flexibility of a genetic counselor’s role and their ability to discuss the same topics within different contexts in a respectful manner is perhaps one of their best assets, why does this information have to be delivered a certain way? Why is it the social expectation for doctors and genetic counselors to be unbiased? Biomedicine has been studied as a culture of its own, so why is it expected to be communicated in an unbiased, purely scientific manner? Isn’t that a cultural bias in itself?

  3. Hi Abhinay,

    Thanks for a thoughtful post. I really enjoyed these readings, as amniocentesis technology is becoming more prevalent in prenatal care today. My only exposure to amniocentesis testing before this has been stories of family friends deciding whether or not to test, all in the context of stable marriages and Christian beliefs. In the majority of these instances, couples reasoned that abortion was never an option, so why bother testing when there is an added risk to mother and child? It’s important to note that Rapp does discuss themes surrounding this concept especially in Chapters 4 and 9 that discuss the importance of support when seeking advice on amniocentesis testing. Not only did Rapp demonstrate awareness of the differences that race, religion, and class play in access and agreement to testing, but she analyzed the relationships between such factors as well, studying both white, upper class women and working class Latinas in the context of structural factors contributing to lack of access in treatment and their own awareness of how people view them in society (Rapp 2004, 136-137).

    Another comment you make in your post is, “This was surprising to me because more often than not, ethical decisions, especially about pregnancy, are often made difficult when they try to go hand-in-hand with religion.” Although Ivry and Teman’s article does elicit the notion that religion “complicates” or makes it more difficult to decide on reproductive technologies, I’d note that every person experiencing a situation such as this might be faced with their own difficulties. The presence of religion in a person’s life certainly adds another dimension of areas to consider, but sensitive matters such as prenatal diagnoses impact everybody differently. If religion makes this situation more difficult, the lack thereof does not necessarily make it not difficult. I wonder if an atheist woman experiencing conflict in her decisions feels without a source of another “moral” authority to guide her. Does religion actually “complicate” issues of prenatal testing and diagnoses, or just force discussion of uncomfortable aspects of traditional culture some would rather not consider?

  4. Hi Abhinay,

    Thank you so much for your response. Your section about Testing Women did a really great job at summarizing the main concept. Your response reminded me of something I learned in a medical anthropology course I took. We discussed some of the struggles that came with trying to teach medical practitioners cultural competency. By turning cultural competency into something required for medical practitioners to learn, it became a somewhat black-and-white, straight-forward issue. Like diagnosing an illness, medical practitioners would basically diagnose how to talk to a person by assessing their race, religion, etc. The problem with this is that not every person of the same race, religion, and class want to be talked to the same way, nor do they necessarily have the same moral beliefs. In regards to reproductive technologies, how can we better teach medical practitioners to be culturally competent so they can best support their patient and their decision.

    I also thought that your response to Outsourcing Moral Responsibility did a great job at outlining the major concepts, however, i think your response and the text itself serve to point out some of the important issues that go along with cultural competency in medical practice. It is important to acknowledge that different groups of women in studies may present with different values. For example, as you stated, “In another study done on Vietnamese women, it was found that they desired to share their moral burdens with extended family, and the care they received included explicit directions for decision-making. ” While this information is accurate and important to consider, we need to be careful not to stereotype all Vietnamese women into this category.

  5. Hey Abhinay, thank you for a great post. I wanted to further Izzy’s discussion on cultural competency in regards to Rapp’s work. Rapp focuses on genetic counseling and stresses the importance of neutrality in this career. All medical professionals should have cultural competence training in order to ensure that complete informed consent from the patient has been instructed. Many times in medicine, science engulfs patients’ understands of procedures and treatments and thus there is a lack of solid communication between the patient and doctor. Religion, culture and all that it entails, are major determinants into what procedures a patient chooses and how they cope with any medical complications. While genetic counselors should train themselves to be neutral and understand that many various components will go into any forms of decision making, many times, they are not. Because of this issue, I wonder how much background training genetic counselors have and in their efforts to maintain neutrality, are they actually guiding patients’ decisions at all?

  6. Thank you Abhinay for your post! I wanted to comment on the end of your fist paragraph where you discuss where Rapp understands “differences in race, religion, class, etc. ” Although Rapp may be looking for these differences in the attitudes of other women (and even some men) I believe Rapp’s bias still may influence her ethnographic interpretation of these other individual’s cultures. I do want to give Rapp credit however as she begins her books by establishing she is a “feminist activist” (Rapp 2) and she has not only undergone amniocentesis but actually had a positive test result for Down’s Syndrome in her fetus and chose to abort it. Both of these self-proclaimed sources of bias most likely affected her book both. Going into her ethnography she did have a greater understanding for the American amniocentesis process, however she has an easier time sympathizing with her subject which may confound her understanding of what these women went through with her personal experiences. Additionally, while not all her subjects were women, a large majority of her subjects were. She attributes this to the ease of accessibility of these pregnant women relative to paternal men, however, most of the ethnographic stories she tells still focus on the pregnant women.

    While Rapp, just like any author, does have bias, she does do a phenomenal job at looking past it to view other cultures almost objectively. Just as she acknowledged her own bias she also searches for and describes how the bias of the doctors and councilors affect the patients responses and opinions to amniocentesis. One example is how many doctors impose their own beliefs onto a patient rather than trying to understand the patient’s own religion and culture and help guide important decisions on this basis. This points to a flaw in how modern medicine functions today. Doctors are spending less and less time with patients, so in these brief meetings, how can a doctor fully understand the background of the patients?

  7. Thank you for the post. I think you make some intriguing points. One thing I wanted to discuss was the discord between healthcare provides and patients from differing religious backgrounds and beliefs. While obviously no person can completely block out judgment and bias, I think it is important that healthcare providers receive extensive education on how to handle these situations. I believe we talked in class at one point about medical school curriculum. While there are some classes that focus on things like patient relations, most of it is learning about the science side of things. I understand that medical school students already have a lot to learn while there in medical school, but I also think there are ways to help educate them on matters such as what you mentioned. My question would be, why not educate them during undergraduate especially in the United States? It would just be easier to add it as a prerequisite. Personally I believe that medical and moral should be separate, and there should be a universal medical code by which to go by where only medical solutions are offered.

  8. Thank you for a great post! I agree with you on the idea that Rapp focuses a lot on women-centered analyses regarding the moral and ethical decisions made in abortion and the termination of a pregnancy. She draws upon her own experience of consulting professionals, mainly men, when she was deciding to terminate her own. Contrasting the interviews she conducted with individuals from different backgrounds, she obtains a wide range of perspectives that highlight some of the fundamental differences in opinion and treatment. This “multi-sited” ethnography allows for a richer understanding of some of the nuances that we might not think about when considering consultations and medical/religious advice. Local metaphors were noted as barriers in communication, as every language has different views and ideas on medical discourse that don’t typically translate well.

    I found it interesting that the rabbi was so willing and persuasive in offering ethical advice and making moral decisions for the pregnant woman. Breaking down the moral responsibility a bit more made it clear that although he has a tremendous responsibility over his shoulders, he has many other sources and professional opinions to rely on, along with previous decisions made by other rabbis. Most religious individuals, at least in my own experience, find the decision of an extremely pious person (such as a rabbi) to be akin to the word of God. This seems to be the case for many orthodox Jewish women, except the few cases mentioned in the Ivry article about Tali. Her story was unique in that the decision of the rabbis did not find peace within her and made her subsequent pregnancies all the more difficult. I believe that looking at both sides of this argument is crucial in understanding why/when couples heed the advice of religious individuals, what motivates them, and what deters them. All of this is offering even more insight into the ethnography of a group of people as it relates to reproductive technologies.

  9. HI Abhinay,

    Thank you for a very well written and thoughtful post. Your explanation of Testing Women, Testing the Fetus, outlined the authors main arguments about the biases of practitioners very well. Something that I thought was interesting in her book about bias was how the scientific knowledge used by practitioners is used to enforce that stratified social structure. This reminded me of something I learned in Medical Anthropology that reinforced this idea that a way that practitioners established power was to use this scientific vernacular. This had me thinking how this could further negatively influence amniocentesis communication between a patient and practitioner of different cultural backgrounds. This reinforcement of stratified social structure could only further alienate patients and reinforce negative stigmas and fears about amniocentesis.

    This comes in sharp contrast to the Irving and Teman article, where when making moral decisions, Rabbis offer to take on the moral burden when deciding the outcome. This surprised me as well because it is generally assumed that those who work in the biomedical system are to remain unbiased in order to help with decisions and in turn those within religious contexts are heavily biased. It seems astounding to me that instead it seems as if Rabbis help alleviate moral burdens rather than causing alienation like practitioners who enforced stratified social structure.

  10. Great post, Abhinay! I liked that you focused on the Ivry reading, because I think it’s really pertinent to the types of discussions we’ve been having about moral responsibility. There is no “true neutral” way to study or practice genetic testing and the potential termination of pregnancy that it can bring about. There are always questions of morality and ethics attached to these seemingly “purely scientific” or medical procedures. Because of this, people will always be searching for a way to deal with the moral and ethical consequences of their actions, especially if they see these procedures in a negative light. One way to deal with the moral consequences, specifically guilt, is to divide the burden of responsibility among many people rather than having it all on one person’s shoulders. For instance, if a rabbi tells a woman she can get an abortion, the blame for that decision and the action of getting an abortion is not on the woman’s shoulders – it goes to the rabbi. Catholics practice in a similar way; it’s why St. James warns “My brethren, be not many masters, knowing that we shall receive the greater condemnation” (James 3:1). In Jewish and Catholic teaching, the religious leader is the one who bears the responsibility for an action they advise; in this way, the problem of moral responsibility and potential guilt is distanced from the person actually choosing to have the procedure done.

  11. Hey Abhinay,

    Thanks for your post. It had many good quotes from our readings this week. As a premed student, as a few are in this class, I agree with point of the communication between the doctor and the patient or as the author calls it, “Code Switching”. I would argue that in more modern medicine, it is stressed at least by many American medical schools to be more patient-centered, which is why medical schools now accept more people based off of their interpersonal and leadership skills when compared to the past. I also definitely enjoyed seeing that she attempts to put her own biases aside and get a diverse “sample” of people who share their experiences and thoughts through that process.

    I found the Ivry reading interesting. It reminded me almost immediately of House, M.D. (a popular TV show) on episodes where religion comes into question, such as the episode with the nuns and although I can’t remember exactly, a patient who absolutely needed his religious leader (pastor or something else, honestly forgot) to come and say if the procedure was okay and to say a few words of prayer. For me, it shows the power of religion and what effect it may have on healing and perhaps “sharing the responsibility of a decision”. Personally, I think it plays both ways. For a religious person to have a blessing for a certain procedure allows for them to feel less guilty (if you want to word it like that) or less compunction (if you want to word it that way) is huge in terms of their healing process, as I believe that the brain plays a significant role in fighting a disease or even staying alive. In addition, it can take off that burden of responsibility that the patient or their family has to deal with to make a risky decision for themselves that might result in their own death. Having someone else share in that responsibility and decision making process eases your mind (tying back into that idea that the state of the brain makes a difference in the recovery/survival process) a little more than if you had to make a life-altering decision by yourself. Like Eleni and others, I found it interesting that Rabbis took on the moral burden of making a decision and seeing the outcome. It almost feels like what we talked about last week in class, when Dr. Seeman described how doctors in the past would withhold information from patients because they didn’t want the patient or family to taken on the burden of having to make decisions that may influence a person’s life. I feel that effectively this is what the Rabbis are doing, as they try to take away that feeling of guilt, indecisiveness, and/or fear of what may happen from the patient or their family and put it on themselves.

  12. 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.

  13. Hi Abhinay,
    Great work on the blog post. I enjoyed how you placed more emphasis on the shorter piece and concisely summarize the longer work. In particular, I thought your piece on Rapp’s book did a great job emphasizing the key points of the book while your piece on Ivry’s work did a great job digging into the details. You mention how different beliefs lead to a cause of bias by practitioners and I agree. A practitioner will give you the facts and also hint towards what they believe is the best choice even if unconsciously. Thus, I wonder how a standard of a third-party decider like a rabbi would affect society. Rather than deliberate over the decision ourselves, we let others decide the morality and ethicalness of the issue. Thus, if such a concept were to be implemented, would it have a generally positive or negative impact on everyday life? Personally, I feel that this would be a generally positive implementation but in the United States, people tend cling onto the notion of free will which could make this concept very controversial.

  14. Abhinay, great post this week. I thought you posed some great points and did a nice job of summarizing the readings. In this comment, I’d like to further a point that was made by Maria regarding the cultural training that goes into the field of medicine. As it has been made clear, Rapp focuses on the genetic counseling and the importance that comes with being completely neutral when working with the patient. Simply put, it is a part of being a doctor. They must provide for the patients – regardless of the situation or accident that they may be in – clearcut communication in the most even-keeled way. Although it might seem a bit robotic, this is to actually help the patient. At the end of the day, we are all humans and have the innate ability to interpret both facial expressions and the words that come from our mouths. This not only muddles communication, but it can put unnecessary fear into the mind of the patient. Lastly, there are external surroundings in each person’s life, such as culture, religion, friends/family, and these influences create expectations in the decision making process for the patient.

  15. Hey Abhinay! Thanks for your post. I was thinking about a lot of the things you mentioned, including the intersectionality in Rapp’s article as well as the problem of communication between patients and genetic counselors/doctors. I believe someone else touched on this a bit, but the neutrality and strictly information driven tactic used by genetic counselors is definitely a lot of pressure put on a patient to not only understand the complicated science, but also the implications and moral pressure imposed by this situation. Less educated women or women who might not be native English speakers could have a lot of unnecessary stress put on them if they don’t completely understand the science.

    I also think the idea of moral outsourcing is particularly interesting in such a deeply personal case like this. A lot of cultures (the American women in Ivry’s article) place stigma on disabled individuals, as well as discourage sharing overly personal information. I’d be interested to hear more about this perspective and from a wider sampling of cultural representatives to see if “moral outsourcing” is the norm or a deviation from it.

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