16 thoughts on “Week 5: Culture of Testing

  1. Hi Leah,
    Thanks so much for your response to this week’s readings. I find your use of the term decentralized to describe how moral judgement takes place in Judaism to be enormously helpful in creating a greater understanding for myself exactly how that process works. As a political science major, framing the issue in that language illustrated clearly how the process works, and that, rather than necessarily have a fully-fleshed out centralized set of laws or a single unitary figure at the head of the religion, Jewish law allows for interpretation by the individual or individual religious leader. This is also an interesting factor in the shifts of responsibility and fault you raise. Rather than being able to blame religious doctrine or ideology when something goes wrong, because local religious leaders are the ones actually generating the interpretation, people have to take the blame. Although there is some division of the responsibility at that lower level, which might be able to dilute blame, this is a distinction from religions like Catholicism, where, in theory, if a local religious leader gives poor advice, they might be able to blame a higher ranking official’s interpretation or Catholic religious doctrine itself. I also found it interesting that there is an increasing divergence between the language used in science and the language used in everyday life. This is particularly poignant in the field of reproductive medicine, an especially emotionally charged area of medicine, as it means that patients and providers might be (metaphorically) speaking different languages, creating more confusion than is needed. The big question in this regard that occurs to me is over who needs to take steps to rectify this problem. Is it the onus of the physicians to speak to their patients in terms that they understand? Or is it on the patients themselves to be able to have high level medical discussions with their providers? Even further, is it on the education system to ensure patients are capable of having those discussions? Overall, great job analyzing the readings and creating avenues for further discussions in class!

  2. Hi Leah,

    I really appreciated your reflection on the readings this week. Your comment about how going to a rabbi takes away the fault and guilt of the couple who has to make an extremely tough decision, made me think about how in the documentary we watched, many of the women commented on how inhumane the decision making made them feel. Another point that this reminded me about was how some women felt like this sense of detachment during the waiting period of results from the prenatal testing–they knew that they had a living thing inside of them but did not want to feel too attached while knowing the decision about the being’s life depended on test. I also agree that these readings on the subject made me think a lot differently about prenatal testing and its possible connection with eugenics. In the documentary when one of the mothers said that this technology allows us to ‘eradicate’ people with disabilities, even though they are more integrated into society now than ever before. Additionally, I never thought about how genetic counselors serve as the ‘middle-men’ persay. As someone who strives to go into the healthcare field, I just thought about how they ‘help’ people and I never really thought about how those words could be super overwhelming. I do believe that knowledge can be used as power, but for some it seems like it has too much power.

  3. Leah,
    I really like hearing about your personal experience working with genetic counselors. Even though we are students at a highly regarded institution, genetic testing and birth defects can even go over heads. I remember when my cousin was born with bacterial meningitis which slowly ate away at 99% of her brain before the doctors could put a stop to it. She was left without the ability to walk, talk, see, eat, or stand. My family, which is made up of doctors(!), was incredibly disoriented and upset. Not only did was she severely disabled but she was given a life expectancy of two hours. Many of these issues are also confusing because it is hard to admit that loving a child with special needs can be more difficult. Parents and families want to say that they can and will love a child no matter what they are like, but the reality is that it can be incredibly challenging. Nobody wants to say that they wish their child had turned out differently or that they changed their mind when they learned of the diagnosis. But the reality of these prenatal tests are that these issues are becoming more front and center. Parents are forced to make these choices and confront the anxiety and difficulty of it head on. I wholeheartedly agree that prenatal tests make parents confront “what they can handle as people,” especially because I have watched people in my family go through that very same experience. They kept Jamie, my cousin, as long as they could, but there is no denying that it was an emotionally brutal and financially taxing process for everyone involved.
    Another issue that intrigued me this week is how single mothers or lesbians expressed frustration when asked for details on the man who had impregnated them. Although I understand that these questions are uncomfortable, personal, and emotional, I did not understand why there were upset. Their sexual preferences may have changed or the man may no longer be in their life, but I feel that the genetic counselor, from a biological and medical standpoint, was simply doing their job. Especially when it comes to the issue of genetic testing, it seems crucial to know everything about the man who helped make the child even if they are not present for the pregnancy.

  4. Hi Leah, thank you so much for your thoughtful reflection this week! I think your insight on working with genetic counselors really drives home one of the main themes of Rapp’s book, which is the striking differences between scientific terminology and common vernacular. I think this is actually something that could be an even broader conversation than just thinking about prenatal testing–thinking about the ways in which things that are affecting everyday humans are often presented by experts and academics in ways that they could not even begin to understand. Like you said, even someone like you, who has exposure to this topic, half of it doesn’t even make sense. I actually think there’s a lot of danger in assuming that the everyday person even knows what a chromosome is, like you said. Can patients really make an informed decision if they don’t fully understand a concept? Who is it on to make sure they understand it? I think that is why the role of the genetic counselor is so valuable–their purpose exists as an opposition to the assumption that patients know what is actually happening during prenatal testing. I think there is so much more to dive into on this topic and it can probably be applied to most of the things we talk about in class, i.e. whose responsibility is it to understand/explain what is happening scientifically in a way that the majority of people can understand? Overall, I really enjoyed reading your reflection Leah, I think you brought up a lot of good ideas and prompts for further discussion.

  5. Hi Leah. This is great. I really appreciate how you emphasize the importance of translating scientific jargon into something more understandable to the common patients awaiting prenatal testing, or receiving test results, etc. That was something that I felt to be a great point touched upon, mainly by Rayna Rapp and in the film. But you also talk about how the rabbis all work with each other to make a decision so that no one person carries total fault for anything, as was described in the Ivry and Teman article. That was also a great point made and good to be emphasized upon. And lastly, I thought it was great that you touched upon the nuances expressed by patients of amniocentesis and their views on knowing, on what they do with new knowledge, on disabilities, etc. These I took as the most important topics in all the pre-work.

    I do want to ask the question: Where do eugenic ideologies related to the ideal child conflate with this idea of a pregnant woman acting early as a mother in order to advocate for the welfare of her fetus, and whether it is best for it to live or not be birthed? This is something that I was perplexed by, when doctors were angry with parents for not testing their amniotic fluid and then they birthed children with down syndrome. I would like to know how much of the doctor’s chastizing there comes from love. I think this would have been a cool thing for you to touch upon. I think that there was rich background for this too, whether through rabbinic discourse before reproductive decisions, or parental discourse, whether that described in the movie or the book. But still, great, awesome job!

  6. Leah, thank you for providing a clear and insightful synopsis of this week’s media. You seem to agree with Rapp’s characterization of genetic counselors as “moral pioneers.” This phrase led me to think explicitly about where moral responsibility and the ethical frontier exist in terms of fetal testing. From all this week’s content, it is clear that there are variable opinions on the location of this responsibility in both religious and secular groups. It is also clear from this week’s content that regardless of the lack of consensus on this topic, pregnant women feel a tremendous moral burden when it comes to the pregnancy care that they receive. The woman who sought advice from Rabbi Cohen believed that God was punishing her for terminating her pregnancy even though she was following a Halachic ruling. Some women in the documentary blamed pregnant women for going through with testing and others felt they would be blamed if they did not do fetal testing. The very existence of fetal testing technology makes this moral controversy inescapable for pregnant women that have access to it. The Ivry and Teman piece provides evidence that the rabbinical community recognizes this burden and uses decentralized strategies to combat the pressure. Despite how pregnant women may feel, you and Rapp point to genetic counselors as the “middlemen” that are entrusted with very significant moral responsibility. I think it’s interesting that more people do not place moral responsibility upon the developers of these fetal testing technologies. To me, the inventors of fetal testing technologies are closer to “making concrete and embodied decisions about the standards for entry into the human community,” than the women who use them on a case-by-case basis. It would be enlightening to learn in-depth how these technologies were developed and the decisions that were made that allow us to test for certain abnormalities rather than others.

  7. Hi Leah! Thank you for such clear and insightful reflections on this week’s materials. I found your discussion of genetic counselors and your personal experience with them very intriguing. You seem to portray them as rather neutral middle-men. However, I think by calling genetic counselors “moral pioneers,” Rapp also points to the ways in which their role to some extent gives them the moral responsibility we see shouldered by religious leaders in Ivry and Teman’s piece. Genetic counselors might be viewed as middle-men, and they might also be viewed (as you show in your personal experience) more simply as translators. In the context of literature, viewing genetic counselors as translators endows them with much more moral responsibility, and perhaps moral meaning-making. Just like translators of novels must make decisions about what meanings to convey based on their source material, genetic counselors must make decisions about what meanings to convey out of difficult scientific language. By acting as translators, genetic counselors seem to exercise a kind of narrative control. Language cannot be neutral and thus shapes the “knowledge” patients receive.
    “Translation” also requires an attention to the audience, a knowledge of the culture to which the source material is being made accessible. What metaphors will the readers (or patients) understand? You point out how genetic counselors translate medical jargon into “common speech.” What exactly constitutes “common speech?” Rapp points out how this differs across race, class, age, and a variety of other social factors. I think Rapp also poses a question about the idea of “individual choice” both about whether to test and about what to do with test results. Who gets to make the choice—is it just the woman carrying the child, or also the father, or a larger family unit? The concept of individual choice is valued within certain social and cultural settings—Rapp also points out how even feminists might challenge these ideas.
    All of this seems to complicate the idea of “informed consent.” I found your concluding question about knowledge very intriguing—is it better to know? However, I think this question raises more questions about what exactly it means to “know” in the context of prenatal testing. How does the language in which testing is communicated influence what patients are able to “know”? How is knowledge shaped by the mode of communication and by the biases or shortcomings of counselors communicating or “translating?” How is the “knowledge” itself influenced by various cultural, social, and political factors—are the “facts” or the scientific outcomes truly objective, or is the knowledge we produce and the way we communicate this knowledge always bound up in larger structures of power?

  8. Hi Leah! Thanks for taking the time to write such an insightful post. I especially appreciate your use of personal experience with genetic testing to illustrate the clear vernacular and informational divide between medical professionals and laypeople in this incredibly complex issue.
    To answer your question of whether or not the knowledge of a pregnancy’s outcome is a net positive, I have to think about the implications of what parents do with the information. My biggest dilemma with these readings was whether or not prenatal diagnostic (PND) procedures point society in the direction toward eugenics, something you touched upon in your reflection. I believe “The Burden of Knowledge” documentary and Testing Women, Testing the Fetus highlighted this conflict best. In “The Burden of Knowledge,” I got to actually see and hear from families undergoing the complex process of PND instead of just reading their stories from a piece of paper. Hearing their wide variety of emotions as well as their thought processes surrounding their final decisions was truly eye-opening. However, one mother said it best when she pointed out that using PND services and basing the decision to terminate pregnancy off the disability results of the PND allows one to say that those with the disability do not deserve to live, that their “suffering” would outweigh the benefits of their life. However, there were also families that decided to terminate not based on their ability to raise the child but instead based off the “burden” the child would put on the family.
    Rapp also raises the question of whether or not the pregnancy is being terminated due to the interest of the child or the interest of the family. She is the only source I have read on the matter that actually talks to groups centered around children with Down Syndrome. In doing so, she discovers that many parents value their children with Down Syndrome just as much as a parent with a normal child, comparing “red roses” to “blue tulips” in that they are different but come with their own unique benefits (Rapp 294).
    I certainly don’t have the ultimate authority on the matter, and the “Shouldering Moral Responsibility” reading shows that individuals will split up the responsibility as much as they can to avoid culpability for a complicated act that some deem as sacrilegious. However, I went into the issue with a cut-and-dry opinion that knowing your child has a disability is a clear indicator for termination. Now, I believe I have a more nuanced opinion thanks to the readings and your great reflection on them.

  9. Leah,
    I really enjoyed reading your summary of this week’s reading and documentary. Your work with genetic counselors and how that impacted your view on this week’s material was very interesting. Your interpretation of the rabbis sharing the difficult decision with parents was something I hadn’t yet thought of. This is obviously a difficult topic because, as you mentioned, it does diverge into the topic of eugenics. Is it ethical to terminate a pregnancy because prenatal testing indicated a genetic disorder? What impact does this have on disabled communities? The documentary “The Burden of Knowledge” gave interesting insight from those expecting children and their own opinions and experiences with prenatal testing. It comes to the conclusion that the choice is ultimately up to the individual and whether or not they want to go through with the testing. However, my own feelings on the topic are very mixed. While understanding the mental and financial responsibilities that come with having a child with a disability, is that reason enough to terminate a pregnancy? At the same time, I could see myself terminating a pregnancy for more insignificant reasons. I agree with your conclusion that there is not one steadfast solution to this topic. It reminds me of the saying, “ignorance is bliss”– as this week’s material suggests, some may consider it better to not go through with genetic testing.

  10. Hi Leah! Thank you so much for sharing your reflection this week. I appreciate your thoughtful meditation on such a complex topic, and I think your perspective as someone in the field of genetics is especially helpful. You intricately connected this week’s topics to our previous discussions, and I particularly applaud your analysis of the role of the rabbi in Jewish reproductive ethics. However, what most resonated with me was your mention of “responsibility” and “fault”: who is responsible for a child born with unforeseen abnormalities which could have been shown in a prenatal test? Who is at fault when a child shown to have abnormalities through testing is terminated? Is anyone responsible or at fault? I have noticed many dichotomies throughout this course so far in discussing the ethics surrounding reproductive technologies, such as nature vs nurture, ethnography vs theology, legalistic kinship vs social kinship, etc. I will now include the balance between responsibility and fault. The ethics behind prenatal testing are complicated, and it can be tempting to search for a conclusive answer to make sense of the nuances. However, we should instead analyze each case within the context of those involved and from our own perspective of respect.

  11. Hello Leah! This was a well written and detailed analysis of our reading for the week, and I appreciate that your commentary reflects the fluidity of thought and practice that the Jewish community exhibits. I particularly found the role of the rabbi in this context to be interesting – many secular couples go through the infertility process based on the opinions and advice from their doctors alone, so the inclusion of religion in what seems to be an entirely medical process truly provides an insight into the role of Judaism in parts of life outside of the synagogue. This discussion that you provided goes hand in hand with Khan’s writing, where she makes the point that couples going to a certain rabbi may hear an interpretation that is completely different from if they went to a different rabbi. This makes me wonder about the internal dialogues that happen within leadership of the orthodox Jewish community in regards to prenatal testing and whether or not a more secular or open opinion is prone to heavy scrutiny from other rabbis. Your description of genetic counselors as “the middle man” between the highly scientific jargon of the medical process and the likely uneased and unaware patient reminds me of the role the rabbi in orthodox Jewish communities plays in regards to infertility. However, instead of scientific jargon, they are doing their best to sift through textual and rabinic interpretations to find the best answers for those they are helping. Lastly, one of the final points you make in your reflection is that the topic of prenatal testing is complex and every individual’s comfort level varies. I agree with this point and think it is important to note that comfort level is built upon a personal moral code. Whether this code is built upon a foundation of religion or some other ideology, I think that the diversity of thought surrounding this topic will maintain its relevancy as technology continues to advance.

  12. Hi Leah!
    I loved that you gave the highlights from each reading as well as giving your own opinion. I especially liked how you emphasized that this discussion doesn’t have a right or wrong answer to which I agree and also disagree (but also agree lol).
    I have always been a supporter of a women right to choose as well as most of the people I surround myself with and something that surprises me is that a lot of my friends who are pro-choice don’t agree with abortion if it is to abort a baby with a disability. To me this was surprising. I also do wonder why this question is such an ethical dilemma in the United States. Other countries such as Norway and Sweden have significantly less rates of cases with Down syndrome than the United States due to amniocentesis. It is common and not taboo for women in these countries to choose abortion just on the basis of the possibility of a defect.
    I particularly liked the article, Testing the Women, Testing the Fetus,” because it portrayed how complicated this issue can truly get. For example, I believe there are many reasons as to why a women would abort a child with a disability which could include money, time, and resources. In this article, the author touched on the selfishness of aborting children with disabilities and mentioned that one of the interviewees said, “What about me?” I find it odd that this wasn’t a valid question. If a mother is the one who does most of the child rearing and will be the one taking care of the child, why wouldn’t her own feelings matter? On the other side of the discussion, it really did sicken me how certain interviewees described disabled children as “it”, “those people,” which highlights how many people feel about disabled people in general.
    I agree with you that this decision does not have a right answer, but I do think the best answer is the individual couples’ choice.

  13. Hi Leah! I also agree that mutations make each person unique, and I wish more people took this into consideration. Many people view mutations as something that is harmful without realizing that we all have mutations. When we take into consideration how everyone has mutations we can better understand how easy it is to pass on a harmful mutation to our offspring considering all the processes that make up who we are. For example, when a pair of chromosomes are not separated from each other during meiosis, this can result in Down syndrome or a miscarriage. I wish that more people would take the time to understand this rather than put blame onto the parents. I’m Buddhist, and many Buddhist view unfortunate events that happen to people as a consequence of their past actions, or karma. I hope that more people can move away from putting blame on parents and take the time to understand how common mutations are. I also enjoyed reading about amniocentesis because I am aware of many doubts of it. In a class I took on child development, I learned that many parents were hesitant on having a amniocentesis procedure done because of the risks, such as having a miscarriage or having an infection in the uterus that can pass onto the child. Many parents hesitated because they didn’t know if this risk was worth testing the fetus for abnormalities because there was a chance that the test could cause more problems. In my class, we had a poll within the students on whether we would personally go through this procedure or not. Surprisingly, about half the students said that they would have an amniocentesis done on them whereas the other half was against it. I wonder how common it is to have a harmful side effect of amniocentesis and whether there is another way to test the fetus that isn’t as invasive with growing technology. I enjoyed reading your blog, and I appreciate how smoothly you made your transitions.

  14. Leah, thank you for such an eloquent blog post. I enjoyed reading every part of it. I especially liked your comment about how, in Judaism, the Rabbi takes some of the responsibility the couple has in deciding what to do with the misfortune of being pregnant with an unhealthy child. The couple does not need to struggle alone, as the Rabi will guide them through what choice they should take. As you said: a perfectly healthy couple can hace an offspring with a certain genetic mutation that can causes a certain disease. Rayna Rapp further talks about this idea in “Testing Women, Testing the Fetus (Routledge, 2000)”. She explains that, in the past, having a disease was also categorized as a lower ranking individual in society. Countries even went as far as to want to try to eradicate the reproduction of such individuals through different laws in order to have a “high quality” population. However, genetics is imperfect and, in some cases, impossible to predict as the process is random. Even through genetic counselors (one of the main topics in Rayna Rapp’s book), whether a child will be born with or without a condition can sometimes be unpredictable. The fear of having to deal with a situation like this in embedded in history, especially with having diseased children. In general, I think that different people process bad news in different ways. However, there is one thing everyone has in common: everyone is looking for answers. In this particular case where couples are told that they will have a child with a condition that can be fatal, life altering, or very hard to deal with, they can feel alone and utterly scared. Genetic counselors are great at guiding them on what choices they have, but the couple must choose themselves, and can feel an overwhelming amount of responsibility and guilt towards the decision they make. I find it to be very special that, in Judaism, the couple does not have to deal with the situation alone: Rabbi’s can help them decide (according to Jewish law), and accept the faith of their child. There is no concrete response to why bad things happen to certain people, and that is why it is so despairing to receive bad news, so I think that the Jewish approach to dealing with this situation in particular can mediate the despair a couple may feel when having to decide what to do with their unborn child.

  15. Hi Leah! Thank you for your insightful response to this week’s readings and film. You did an excellent job synthesizing the three pieces and pulling out some really interesting details.

    I found your characterization of the rabbi as a judge to be particular interesting. This was a really unique way of framing it. I think I might adjust your framework slightly, with the rabbi as the jury and the parents as the judge, because ultimately it is the parents choosing to carry out what the rabbi determines (akin to the parents engaging in sentencing and the rabbi determining a guilty/not guilty verdict). However, I wonder how often it is that couples choose to go against what the rabbi recommends. I also like that you discussed how going to the rabbi spreads out the responsibility so no one person is at fault. I wonder if this is a theme in Judaism? I ask this because growing up, we were always taught that if someone dropped the Torah they would have to fast for 40 days. However, the people in the synagogue’s congregation could split up this burden, each taking a day or some period of time to fulfill this fast. This reminded me of spreading out the responsibility by going to the rabbi to decide what to do in the cases Rapp describes.

    You also bring up that some characterize amniocentesis as a form of eugenics, narrowing the population based on what is deemed “normal.” I wonder who defines “normal?” Where is the line between “normal” and “abnormal?” While some may consider the results of an amniocentesis reason to terminate a pregnancy, others may choose to continue the pregnancy with the same results.

    That is so exciting that you volunteer with genetic counselors! I would love to learn how you became interested in this field and any stories you may want to share from your experiences.

    In your blog post, you mention that you are the kind of person who would want testing to know if something is wrong, while some people choose not to know. I wonder if there are factors in people’s upbringing that make them the kind of person who would want to know v. not want to know. Additionally, I wonder if there is ever a world where testing for certain diseases or disabilities is required. I don’t anticipate this happening, but I am curious to what extent it has been discussed.

    You did a great job describing the complexity and I look forward to hearing more of your thoughts in class later today.

  16. Hi Leah! Thank you for sharing your thoughts about the readings and documentary as well as your honesty about your experience with the culture of testing. I found particularly interesting your points about the vernacular we use around genetic testing and the relative ambivalence towards testing as presented in the documentary.

    I recently read the book Cultish: The Language of Fanaticism by Amanda Montell that focuses on language used in different groups, organizations, and cults. The vernacular used within groups oftentimes furthers the ideology of said group: this is a relatively obvious phenomenon. I think what is interesting in relation to genetic testing, though, is that the ideology of genetic work is rather unclear because of the esoteric nature of genetics as well as the myriad of ethical questions surrounding it. The medical jargon that professionals use around genetics separate patients from their own intuitions about procedures, and perhaps are indoctrinated into the esoteric and ambiguous facets of genetic work. The jargon eases the blow of making decisions around very difficult ethical and moral questions.

    I believe that the documentary may carry some of this ambivalence or “back and forth” nature toward genetic testing because perhaps people were cued into the dangers of genetic testing from the start. Maybe before the vernacular around this field was more commonplace, people carried more healthy skepticism. This is a topic up for debate, but I am highly interested in the power of our vernacular in how it orders society and can heavily impact people’s senses of their own morality and decisions.

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