Cultures of Testing

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.

20 Replies to “Cultures of Testing”

  1. Thank you for the great summary of this week’s readings, the commentary on how they complement and challenge each other, and the questions and ideas you pose! One point that I felt extremely important to Rapp’s text and our discussions in previous weeks was her commentary on the role of others (besides the pregnant woman) in the decision making process, and how perceptions of their role can be heavily influenced by traditional kinship relationships that define families in specific societies. For example, some societies hold great value in the opinion of the male of the the household, others might hold emphasis on the importance of the child no matter their gender, and some societies value a child of one gender more than the other. Is one perspective or the other truly right?

    In Chapter 3, Rapp offers many interpretations of the “proper” relationship between a woman and the male counterpart of the fetus she is carrying, and how these relationships might be highlighted or dismissed in genetic counseling appointments. This role can look very different depending if the woman is married, if she is using a surrogate to carry the child, or if half her child’s genetic information comes from a sperm bank. Rapp identifies how interpretations of roles in the pregnancy cannot be presumed or glazed over, but they must be heard and understood.

    Overall, I took away a major theme of the importance of gaining perspective of the individual woman in her respective situation. Getting to know her and the world she lives in that is influenced by her religious beliefs, socioeconomic status, and ethnicity can give great context regarding her opinion of pregnancy and prenatal testing. It seems to all boil down to the ability to not only code-switch with language, but also with understanding of personal preferences with respect to cultural differences.

  2. Thank you for a great blog response. You did a really great job hitting all of the major points from Rapp’s book. In particular, I liked where you said, “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.” This relates to what I responded to another blog post about, the issue of cultural competency. We cannot expect every Catholic to practice their moral beliefs the same way and likewise cannot expect everyone of the same race, religion, etc., to have the same moral beliefs when it comes to reproductive technologies and amniocentesis.

    I also liked how you discussed the role of genetic counselors as one that is not unbiased. While they are trained to be neutral, genetic counselors, they are still human have opinions. As you also pointed out, neutrality is not necessarily a good place to be when some women might want someone to push them in one direction or the other.

    The last part of your response I’d like to point out was where you discussed how some women get upset when doctors talk to them about statistics; they feel as if their individuality is being reduced to a statistic. I think this is important because using statistics is very tricky. Some people find comfort in knowing they aren’t alone while others feel like it is minimizing the severity of the situation they are in. This again shows how complicated discussing these moral dilemmas with patients are. We need to make everyone feel important, safe, and not alone so they can make the best decision for them.

  3. Hey Jillian, thank you for posting! I thought you did a great job at analyzing important ideas from this week’s readings. I liked that you pointed out how Rapp included a diverse sector of women in her work and did not just focus on the upper-class white female in her discussions. I agree with your point that Rapp’s discussion is more than just a black-or-white debate. All forms of prenatal testing and intervention are culturally constituted and patients who endure these procedures are influenced by a number of different beliefs, religion being one of them. As you had mentioned in your post, religion can make the decision-making process even more difficult because it does not always have a clear view on what is deemed right or wrong. As Paige mentioned in her comment, it is important to gain a perspective of the patient when assessing such procedures and understand that factors such as religion, socioeconomic status and culture all have a role in influencing the woman’s medical decisions.

  4. Thanks to all of the posters this week. I enjoyed reading all your posts and would just like to further elaborate on some of the concepts or ideas you mentioned.

    Rayna Rapp’s careful consideration of differences in race, religion, and class was due to her realization that intersectional perspectives, and sometimes even just an actual woman’s perspective, was missing from the medical research when she herself was looking for information on her own fetal anomaly, which is why she aimed to include as many differences between women as she could.

    In “The Disabled Fetal Imaginary” chapter, the misinformation of women and men were widespread – from not considering other fetal anomalies and only thinking of positive Down Syndrome’s results from testing and confusing kids with cerebral palsy for those with Down Syndrome’s. I thought this misinformation was, in part, due to miscommunication and also the number of resources available to men and women. I thought that this was also due to the misconception that anomalies are similar and can be grouped into one category which prevents people from understanding different syndromes and anomalies.

    Ivry’s article, “Outsourcing Moral Responsibility,” reminded me of our discussion in class of institutional religious figures and the authority that they have in their various communities. Specifically, we discussed in class how rabbis are the equivalent of the CDC as public health authorities and therefore have the power to, in this case, give their ethical judgment on these situations of reproductive technology.
    I believe that it is likely that the neutrality of healthcare professionals does in some way leave women to take the moral responsibility onto themselves, like in the case of the woman who spoke to Rabbi Cohen about her fetal anomaly. Despite the Rabbi telling her that it will be he who will hold the responsibility when the woman falls she believes that is God punishing her. Such a statement is due to an ingrained sense of moral responsibility which, I believe, is exacerbated in part by the neutrality of healthcare.

  5. Hi Jillian,
    Thanks for the great post. I completely agree with the issue of “Code switching” as a major contributor to difficulties in communication. As a science major myself, I have definitely been in a situation where I need to decide what information to include and what to exclude towards certain audiences. Too much information or too little information would make them too confused to fully understand the material. In your post, you mention the usage of statistics and how being reduced to a number was not beneficial to the understanding of the patient. I agree but at the same time, numbers are easy to understand and concise in conveying information. In an era of informed consent, knowledge and understanding is important for both the patient and the doctor. Thus, I definitely understand how balancing and distributing information to each patient has become difficult.
    Additionally, I found Ivry’s idea about sharing moral responsibility to be very interesting. The doctor would give information that the rabbis would then decide upon. Additionally, rabbis would then justify their answer by the decisions of other rabbis in order to further lessen the moral burden. This idea was a new gray area for me within this moral dilemma.

  6. Hi Jillian. Thank you or the summary and commentary on the readings. I liked how you brought up the point of how intricate the healthcare systems are across countries, because I think the complications of navigating the healthcare system often gets overshadowed by the moral and ethical debates of reproductive technologies. Before an issue can even be debated, for many couples/women it must first be accessible.
    With the point brought up of increased safety of the amniocentesis procedure, I think it makes people more willing to consider the option which gives rise to more ethical debates. In these ethical debates there are key players that inevitable influence a couples decision on what to do with their specific situation. As Rapp pointed out, the role of genetic counselors, and doctors will play a role that, although aimed to be objective, is almost always subjective. Irvy too, notes the relationship between key players of FLOH such as rabbis and medical professionals, and how that largely influences women due to the inherent connectivity between science and religion according to Rapp.
    One point I really liked that you brought up was the use of jargon within the healthcare system and how it inhibits those who are less scientifically literate. This is a big problem within the healthcare system because it prevents people from fully understanding their own medical situation and its implications with various decisions. Especially when combined with the moral dilemmas that come with testing and termination, it becomes increasingly important to understand the different backgrounds. This is something I think the reading by Ivry really highlights as she explains how a rabbi with FLOH will make decisions about the pregnancy for a woman based on a number of factors, and will have a different opinion on the same situation between two different woman.

  7. Hi Jillian,

    Your blog post brings up a few points in the reading that would be interesting to discuss. Thanks for pointing out the main aspects of Rapp’s arguments and observations in her book – you connect them nicely and coherently. Rapp’s work focuses on many perspectives of women and analyzes themes from women’s points of view. One interaction you mention between genetic counselors and women is the issue of paternity. You mention that single mothers and lesbians might feel ostracized when asked questions regarding paternity. This is certainly so, and is an idea that most likely contributes to anxiety during pregnancy as well. This question, though, proves necessary in understanding a woman’s support network or outside influence on her decisions. Rapp mentions that fathers of fetuses can actually be a significant barrier to prenatal genetic testing for women because of superior male gender roles in society (Rapp 2004, 182). Herein lies a delicate balance in counselors’ attempts to respect boundaries in patients while attaining enough information necessary to advise in an informed manner.

    I am also intrigued by the concept that women worry about the suffering of a fetus when born into the world in the context of the quality of life and resources it would have. I find this “selfish” view of prenatal diagnosis somewhat confusing. In my interpretation, these women are envisioning their fetuses as future children and determining whether or not their lives will be good enough due to financial or familial strains. Do women assume complete moral responsibility when they view a fetus’s future in this way? In considering what might be best for a woman herself, is she by association considering what is best for a fetus? There is little way to divide “moral labor” in a situation in which a woman assumes herself responsible for another life in this line of reasoning.

  8. Hi Fiona! Thank you for the summary and perspective on the readings. I liked the point you brought up the implications of eugenics that come with amniocentesis. I had listened to a genetic counselor speak about her career for a class and had not thought of it in a negative connotation until Rapp brought up the idea. I wonder if the negative connotation and the idea that some humans may be “superior” creates apprehension within woman considering testing and other related procedures.
    Something I think that is worth addressing is the patients feelings towards testing, abortion, and having a child with abnormalities. The reading by Ivry talks about how a rabbi, when making a decision to help a woman or couple, will consider the parents’ attitudes towards the kind of fetal disability and if having a child with that disability would negatively affect their happiness. Rapp also mentioned that she consistently found two types of people, people that knew right away they wanted to terminate the fetus, and people that had long decision making process. I think both of the readings place a lot of emphasis on the influence professionals and religious leaders have. However, I think that many women/couples have a gut instinct and go to professionals to justify their feelings.

  9. Hey thanks for your post, I think you did an excellent job with your analysis. It was helpful that you chose many positives of what the authors did, especially the diversity of subjects in Rapps studies. I think what a lot of people are getting at with their posts are similar to what you are saying such that these studies or stories will never lead to a complete and true answer. I disagree in many aspects with some comments though. While I think it is very important for providers to have a good understanding of the patient they are working with (beliefs, religion, so on) I believe that it is more important to offer solutions that are merely medical. Such that they will offer advise that they think is best based on medicine alone, not looking at beliefs and religion. I believe medical providers should just add to the conversation when making a moral decision by explaining the medical side of things, and what is actually happening. I believe this information can be used then by whoever to make final calls later such as rabbis.

  10. Thank you for your in-depth summary and analysis of Rapp’s book. It is difficult to look at a >300 page book and be able to identify and analyze the most significant points the author makes, especially in a book as dense as this. One of these significant ideas you point out is genetic councilors and how they’ve become a full career. I think the whole idea of these genetic councilors is interesting. Historically, those who filled the roles of these genetic counselors were religious authorities. While these religious authorities are often still used in the counseling process, with the rise of atheism, I would figure that many secular individuals would look for a non-religious authority to discuss moral decisions with.

    Irvy provides an example of how a religious authority counsels a couple who’s fetus tested positive for a defect. The rabbi functions to remove moral ambiguity from the couple. If the couple believes completely in the Jewish faith, the rabbinic Halacha expert takes full responsibility for any moral ambiguity. This allows couples to be more confident in their decision. I wonder if secular genetic counselors can provide a degree of adoption of moral responsibility that these religious authorities can.

  11. This is such a thought-provoking post! While there is a plethora of reasons that a woman might not want an amniocentesis, as per Ivry’s discourse on moral outsourcing, it seems as though the religious reasons trump others. Many women will consult a rabbi to see if an amniocentesis should be done and will often follow the decision made by the rabbi. Additionally, as Rapp mentions, the subjective nature of the advice given by rabbis and counselors seems to skew pregnant couples in certain directions. The added security blanket of having someone assist in such a big decision certainly gives many women comfort in what they decide but can also sometimes cause more harm than good.

    The Code-Switching that many people discuss in their comments is also another interesting point of discussion. As someone who has seen firsthand what this medical discourse looks like in the hospital, I can’t even imagine the language barriers felt in countries that might not be as sensitive to these differences. Women that don’t fully understand a diagnosis can easily be swayed in a direction if the doctor is selective and strategic in the information given. This can pose a huge threat to the mother and baby, especially if prognosis does not look promising. Rapp discusses some of these barriers fairly accurately using the multi-sited approach in her fieldwork.

  12. Great post, Jillian! You did a great job of emphasizing and detailing the political angle of Rapp’s book, which I think was a central part of her narrative. In including discussions of socio-economic status, feminism, racism, and similar topics, Rapp communicates to her readers that genetic testing and amniocentesis procedures are not merely a scientific or medical problem. The cultural and personal ramifications of these procedures goes beyond the clinic where they are performed or the laboratory where they are discovered; the questions and answers brought up by these tests impact real people in their everyday lives, in every facet. There is no “truly neutral” way to go about these tests; from the decisions that lead to having them to the choices and decisions that they present to parents, doctors, and religious leaders, no part of these procedures can be completely neutral.

  13. Hey Jillian,

    Thanks for your post. It was a thorough summary and I enjoyed reading it. 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. It obviously is still an issue, where doctors, who have spent so much time studying and memorizing specific terms for diseases and conditions, find it more difficult for them to explain in layman’s terms what the condition means for the patient. Personally, I have experienced this change in practice, as I switched from a Chinese orthodontist to an American one and when I went to see doctors from Emory’s healthcare system. My Chinese doctor never explained to me what they were doing in my mouth, and I would see drills, feel needles, and sense pain for a “routine” cleaning. When I switched over to the American orthodontist, I was told in plain terms and analogies on exactly what they were going to do to my teeth. Same with the doctors I’ve met in Emory’s healthcare system, who told me what the medications would do to my body and what to expect. It may have to do with me becoming more scientifically literate, but I think medical schools are having a drastic shift from the “we know best, and it would place too much stress on your family if they knew what we were doing” mentality. As for the Chinese doctor, cultural and religious customs may also have played a role in “code switching”.

    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. I would have to disagree that Rabbis offer “ethical judgement” as something that doctors cannot, however, as Rabbis are not the sole provider of ethical judgement. Ethics is something that has to be reasoned out, pondered through, and something that everyone possesses. Now I will admit that not all doctors have great ethics, but I certainly don’t believe that all rabbis or all pastors or any other religious authority for that matter have perfect ethical judgement. They probably are more qualified than maybe most people, but I wouldn’t say that no doctors can offer ethical advice.

  14. HI Jillian,
    Thank you for such a thoughtful post. A point you emphasized in your post was how Rapp explored a very diverse group of women, ethnically, class-wise, economically, and racially. This helped give her a strong background in better understanding how prenatal testing and intervention technologies are culturally constituted. Especially in the context of how many women do not have access to these technologies or how their ethnicity or race could influence their understanding of these technologies, many women are at a disadvantage. What I think is an important point to consider is that by not having an equal understanding or access to these technologies, this creates further ethical complications about the use of these technologies.

    There also is the aspect of the biomedical ideal to keep biomedicine “neutral” or “objective” when instead this is a very personal decision to be made that has a lot of outside influences. One point you brought up as an example what how some women found that the citing of statistics was considered inconsiderate of the situation they were in and the decision they have to make. Would it be better to make the interaction between genetic counselor and patient more personal? Would this result in more effective and understandable counseling?

  15. 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.

  16. Hey hey Jillian,

    Great blog post, you did an amazing job breaking down Rapp’s work and really putting it into context with past readings like Donum Vitae and transitioning into the Ivry work(s). I think you briefly touched on a very important idea with this idea of responsibility (in the case of Ivry) and neutrality (in the case of Rapp) when it comes to these strong moral decisions- a sort of ethical kinship. This decision to terminate a pregnancy can be seen in the softest of lights as a medical operation and in the harshest of lights as a literal life and death decision; so, no matter how you slice it there is a pretty weight decision to be made ethically which involves several actors, but now the question is what role does each actor play in this relationship? On one hand we have a woman who instinctively bares all of the moral weight herself, a Rabbi who wishes to relieve some of the load, and a theoretical, neutral medical community. Does this theoretical and neutral medical community have any obligation when it comes to sharing this moral responsibility, as Ivry put it, since they are the ones that are delivering news that creates this quandary? We would say traditionally the medical community just provides insights on medicine but how can we say the introduction of a problem is medical, the conclusion of a problem is medical, but all the process in between is far removed from medicine and shouldn’t even be considered such? Food for thought.

  17. Hey Jillian! Thanks for your post. I really liked that you talked about Rapp’s effort at intersectionality in drawing accounts from a very diverse base of women. To me, this perspective contrasts heavily with the lack of intersectionality, diversity/culture sensitivity training, and “code-switching” problems in the field of genetic counseling (and medicine). As in any subfield of medicine or biomedicine, no two patients are the same and it is important to be aware of the context in which they live. This is why I think anthropology is not only important but also extremely relevant in the medical field and should be incorporated in some capacity. Using language that the patient can clearly and fully understand is also a big problem in medicine, especially with non-native English speakers who may not understand colloquialisms that native speakers don’t even think twice about using. In that situation I think it is very easy for a woman faced with a tough decision regarding her fetus can be unintentionally swayed simply due to communication barriers and a lack of sensitivity about cultural differences by the physician.

  18. Jillian,
    Thanks so much for your work. This week’s reading connect very nicely with the discussion we had last week in class about the culture, social structure, and lived experience triangle anthropologists must understand in approaching any situation. You did an excellent job of following how Rapp highlighted the lived experience/ethnographic discussions regarding prenatal testing, as well as the political, cultural and socioeconomic factors surrounding this topic. Both the book by Rapp and the article by Ivy recognize the limitations of ethnography that we’ve discussed in class and attempt to navigate that issue by basing their discussion on first hand experiences of various individual people. This particular discussion of specific cases serves as a sort of challenge to the universalist claims of healthcare providers and other “experts” in the field who don’t consider enough the individual experiences, Rapp argues. She says “my point is not to abstractly criticize the traditional expertise which lies at the heart of bioethics, but rather to point to the range of practical expertise and new questions that would necessarily evolve if other, more capacious definitions were developed of who belongs ‘inside’ an evaluation of scientific progress and problems” (Rapp 46). This is a broad criticism of who determines science and bioethics. Is it up to a few scientists in a lab or a individuals looking at an issue from a broad range of standpoints? You certainly do justice to this theme of Rapp and our class in general, nicely incorporating a discussion of the role of culture in decisions about ART and amniocentesis in the case of this week’s readings.

  19. Hi Jillian,
    Thank you for the blog post summary. Reading this week, I can’t help but think back to the first day of class when Dr. Seeman wrote “cosmology” in big letters on the whiteboard. What values people emphasize and how they make decisions related to prenatal screening, amniocentesis, or other procedures are influenced by cosmologies. When we discuss ethics, we make value judgments that may or may not align with that of pregnant women. In America, there seems to be an emphasis on a scientific nature for evidence, and here statistics and procedural explanations become authoritative. This is where code switching becomes important. Our colleagues who are loyal and dedicated to the sciences have made a case for scientific language, but we must ask ourselves, what is the purpose of using scientific language and does scientific lingo successfully communicate the message that needs to be conveyed? It is also interesting to compare what religious people believe and what their faith says about prenatal procedures against what religious people actually decide to do (I.e. Keeping or terminating the pregnancy.) I think you are absolutely correct in saying that there are many factors women have to consider when it comes to religious beliefs, other cosmologies, and making decisions about testing.

  20. Hi Jillian,

    One thing that followed me throughout the reading was Routledge’s early self-descrition as an “anthropologist and feminist activist” (2). I think that that is an incredibly appropriate way to describe how Routledge’s voice presents itself in the reading. This is most apparent in the way she mixes her own personal experiences as a woman with true anthropological research in attempting to shine a light on America’s most underrepresented populations of women. This connection reaches its peak in Chapter 4, where her scientific side and feminist consideration;

    “In this chapter, I describe the tension between the scientific meaning of heredity and a model for its control which counselors expound, and the range of popular conceptions of the same domain women and their supporters from diverse background experience express” (78).

    This presentation of the chapter acts as a dialogue between both the scientific and personal, topics that are of similar interest to an anthropologist. This book, including the methods and writing within it, prosper greatly from Routledge’s background as an anthropologist and feminist, with a relatable, powerful voice which takes as much as possible into account.

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