Unit 5: Kimberly Farmer
Access and Agency in Prenatal Testing
Transitioning from our topics on kinship and reproductive technologies, this week’s readings explore women’s outlook on unplanned pregnancy and the use of prenatal testing. Rayna Rapp’s book Testing Women, Testing the Fetus and “Blessing Unplanned Pregnancy: Religion and the Discourse of Women’s Agency in Public Health” written by Dr. Seeman and colleagues discuss these concepts primarily through the lens of the woman. Together, these ethnographies illuminate the complexity of decisions made after conception and the religious, social, moral, medical, and ethical considerations that accompany women’s decisions and beliefs about reproduction.
Testing Women, Testing the Fetus was the result of Rapp’s extensive research on amniocentesis, or prenatal testing, and the relationship between women and their caregivers. Through interviews with and observation of expecting women, physicians, geneticists, and other professionals, Rapp strives to gain an omniscient understanding of women’s decisions to seek or evade prenatal testing. In addition, Rapp has personal stake in the topic as her study was fueled by her own decision to terminate a pregnancy. Throughout her work, Rapp finds that responses to prenatal testing vary across racial and socioeconomic lines. Rapp writes, “middle-class patients (disproportionately white) usually accept the test while poorer women (disproportionately from ethnic-racial minorities) are more likely to refuse it (168). As Rapp proceeds, she uncovers that there is complexity to this statistic. For example, in two hospitals that each serve low-income areas one, Middle Hospital, had a higher rate of prenatal testing than the other hospital, City Hospital. Rapp explains that, “Middle’s prenatal clinic provides a stable and welcoming environment in which women tend to be very comfortable” while “City Hospital, by contrast, has been a site of struggle over services for many years, and the prenatal clinic is a difficult environment in which to receive healthcare” (169). This finding of inequity even within the same socioeconomic status brings the concept of access into the discussion. Access to properly funded medical services, professional patient-centered help, and available counseling appointments are crucial factors in determining the prevalence of prenatal testing. In the Dr. Seeman et al piece, the notion of access is furthered by introducing a discussion on agency. The article suggests that access is not always a limiting factor in the prevalence prenatal testing because often times agency is influenced by a spiritual or religious belief that impacts a woman’s view on her pregnancy. The article highlights a group of young African-American mothers in a shelter in the southeastern United Sates. Through interviews and participant observation, the researchers gathered that unplanned pregnancies we not viewed negatively and were actually seen as a blessing leading some to avoid terminating the pregnancy. The authors write that the women in the study, “experienced divine blessing as a kind of life-giving and life-affirming agency beyond their control” (Seeman et al.) which leads them to reject family planning models. This shows that even with access and education about ending pregnancies, a woman’s outlook on the pregnancy, be it a blessing or not, influences the type of treatments or procedures they may undergo.
These two readings attempt to explain the complexity of a woman’s decision regarding her pregnancy. I found the Dr. Seeman et al article to be particularly interesting in the way that it described how an unplanned pregnancy is a way of enriching a woman’s life in the sample population. As a human health and sociology major, I wonder what other societal factors could be responsible for such a finding—particularly that African-American women are able to find comfort in things that are out of their control. African-Americans and individuals of low socioeconomic statuses are often at the mercy of things outside of their control, be it inner city pollution, high unemployment rates, institutionalized racism or an overall lack of power as suggested by sociology’s Conflict Theory. Essentially, in order to survive these women are forced to accept things outside of their control. I wonder if we could view the women in the study’s acceptance of a pregnancy out of their control as an extension of a survival mechanism used in everyday life rather than a religious barrier that limits agency.
Overall, from these readings one can see that the responses to a woman’s pregnancy are not clear cut nor homogenous across demographics. In addition, the concepts of prenatal testing and unplanned pregnancies cannot be understood without addressing societal, religious, moral, medical and ethical implications. Mothers are the ones burdened with the duty of weighing each of these obligations in order to make the best choice for herself, her family, and her child.
Rapp’s ethnography encompasses a large range of perspectives from various socioeconomic, racial, religious, cultural, and occupational levels. From one standpoint, the inclusion of so many different voices allowed for a more holistic narrative to be drawn in regards to the debates over amniocentesis and the overlap between multiple discourses (ie: feminism, disability rights, etc.), but on another point, Rapp’s juxtaposing of different accounts surrounding prenatal testing further complicates the issue. The debate regarding amniocentesis deals with constant paradoxical issues whether it be regarding wrongful-life legal cases (devaluation of one’s life in order for the family to receive money to help with the life that the case devalues) or pro-choice narratives in relation to disability rights as a feminist issue.
Rapp makes it impossible to attribute a dominant narrative, whether that be Marxist, Foucauldian, or bioethical to account for all the individual facets of the conversation surrounding prenatal testing–something that I enjoyed AFTER reading the text, but found extremely frustrating while reading it, as I was overwhelmed by the amount of voices present. In doing this, Rapp is able to argue for the importance of women’s positionality–each women’s decision taking into account her inclusion or exclusion of various communities (socioeconomically, racially, culturally, and even spatially) and her scientific literacy.
In regards to your point about other societal factors, Social Conflict Theory is itself is a manifestation of Marxist thinking, which simplifies the actors involved to those in power and those not in power. Rapp in her ethnography has proven that issue is more complicated. Based on just the Western hegemonic discourse of a male-dominated society, men are given authority over their pregnant wives’ decisions. However, women like Flora Blanca from Peru, whose partner is opposed to her having amniocentesis, still undergoes testing. Blanca is allowed testing by the counselors who are additional actors in the situation (the counselors are neither in power or not in power in relation to Blanca and her partner). That “male dominance” drives Blanca’s right to choose–giving Blanca agency in a male dominated sphere and she afforded this agency by the counselors who are just doing their jobs.
I thought you gave a very thorough, and complete summary of the two readings. Your blog was easy to follow, and gave good insight to things I did not think about when reading the pieces myself.
I believe Rayna Rapp’s book gave a good introduction into the social determinents of health and how those factors play a role into decision making, especially for mothers. As we know, social class, gender, ethnicty, and other cultural factors can all affect a woman’s access to healthcare. These factors can influence key decisions that a mother has to make during prenatal testing. In Rapp’s book,the inclusion of all kinds of backgrounds gives the reader a greater understanding of the opinions of the women, and why they feel the way that they do.
These two readings gave insight into the complex decisions that expecting mothers make every day. There are many factors that play into the role, that many women cannot control. Finally, I agree with your statement that the social, cultural, and religious factors all need to be understood to better comprehend the concepts of prenatal testing and unplanned parenthood. The comprehension of these factors can help future policy makers, healthcare providers, and even physicians make more knowledgeable decisions about the care that they provide to women.
Kimberly,
I thought you did a fantastic job on summarizing this weeks readings as well as highlighting the major points in the readings, such as the complexities that come with pregnancies and the different views of pregnancy among various groups of people. I liked how you identified the problems that women face with pregnancy, and how religion or socioeconomic status plays a role in how women view their pregnancies.
I would have liked to see you compare and integrate the two articles together a bit more, and identify what the major theme of the week was based on the readings we read. The major theme I came up with was the importance of gaining understanding of the individual woman undergoing the situation. Knowing her socioeconomic background, religious beliefs, and ethnic roots may help one understand how that woman will view her pregnancy and whether or not she wants to go through prenatal testing.
In Seeman’s article, many of the poor African women viewed their unintended pregnancies as blessings, while a white, middle class woman may view the unintended pregnancy as a mistake or socially unacceptable. In Rapp’s reading, I got a little déjà vu from Khan’s “reproducing jews” article. Both authors included interviews of women personally undergoing a pregnancy, medical professionals involved in pregnancy and genetic counseling, and a personal account/opinion. I thought it made both readings more credible, as it provided a wholistic view of pregnancy and testing.
Overall, the question I was left with after reading paralleled last weeks question with ART. The question being “just because we have the technology available, does that mean it is moral to use it?” Essentially, do we, as mothers, as humans, have an obligation to test a fetus for imperfection or do we let God’s plan take course?
Hi Kimberly,
I really enjoyed reading your blog post. There are a lot of complex ideas in these readings and intertwining themes; especially when it comes to looking and understanding the connection between science, cultural, social perspectives, and more. I find the relationship between doctors and patients a fascinating one. In other classes that I have taken previously, a reoccurring theme has often been the right to patient’s autonomy. As you mention, the patients goal to either seek or evade prenatal testing falls under this theme. I really like the point you make about access. It is important to recognize that even when looking at a population with the same socioeconomic status, access varies. When looking at research or studies, it is easy to overlook this aspect. Brining up this point, is very valuable and helps me look at this information through a different lens. The influence of culture and religion on the mothers side is clearly prevalent. What do you personally think about the role the physicians culture and religion plays in this? While the job of the physician is to be patient oriented/centered, I believe often their perspectives weather intentional or not can play a large role in the decision. It is inevitably challenging to remain entirely objective when you are working with values and perspectives that are “close to heart”.
The point you make about “an extension of a survival mechanism” is powerful. However, I don’t quite understand your statement about a “religious barrier”. Do you mean this as a reference to women of a certain religious refraining from utilizing prenatal testing? Something that stands out to me is the point about enriching a women’s life. I would be interested delving deeper into that idea. Something that comes to mind particularly are the potential implications of brining a child into the world and not having adequate resources for supporting that. I would be interested to know more about your personal insight onto terminating pregnancy when there is a clear correlation to disability, specifically in Rayna’s example of her PND confirming Down Syndrome.
Hi, Kimberly
Thank you for your blog post. It is very helpful to see your perspectives as a human health and sociology major. I also found interesting that in Rayna Rapp’s book socioeconomic status plays an important role in prenatal testing: “middle-class patients (disproportionately white) usually accept the test while poorer women (disproportionately from ethnic-racial minorities) are more likely to refuse it”(Rapp 168). This difference is then further explained in Dr.Seeman’s article “Blessing Unplanned Pregnancy: Religion and the Discourse of Women’s Agency in Public Health”. A group of poor young African-American mothers views their unplanned pregnancy as a blessing instead of a negative thing because of their religious beliefs. Can religion really make people disregard real-life struggles? That’s the question I had in my mind while reading. As a natural science major, unplanned pregnancies are just that a sperm and an egg accidentally get the chance to fuse together. There is no more other meaning to it. Performing prenatal testing is part of the health check. However, as you said, I also admire that these African-American women are able to find comfort in things that are out of their control.
Kimberly,
I thought your blog this week was very thoughtful, you gave a great overview of the two pieces of literature for this week and provided really great insights into why we are discussing these pieces. One thing I wanted to mention, only because I do it myself and have been told by almost every teacher I have ever had, was your sentence structure. Some of your sentences were a bit too long and contained multiple ideas/thoughts, one thing I would suggest (and that has really helped me and my writing) is to break things up into more succinct thoughts. Sometimes I have to read my pieces back to myself and see where I can break up my thoughts to make my ideas flow better, I think this is a really good tool to use!
On the side of the articles though, I really enjoyed your discussion of how socioeconomic status in life, and in Rapp’s book, play a huge role in fertility and in pregnancy. I find the story of the African-American women who accept unplanned pregnancy as a gift, inspiring. I think, in many ways, our culture has shifted its focus from a love-orientated lifestyle to a sexuality-oriented lifestyle. There is a documentary titled “Liberated: The New Sexual Revolution” and I think this documentary really shows how society and culture are changing. I tend to think of myself as a bit old fashioned and the African American women here are really speaking to me; I think if you really love someone and end up with an unplanned pregnancy, there could be a lot of potential. Unfortunately, as the documentary and these articles touch upon, this is not really the case for most women. In areas where access to good healthcare, and particularly Women’s Healthcare, is absent, the tough decisions faced by expecting mothers are heightened. There is a lot of associated stress when facing decisions such as how you are going to afford prenatal care and what you are going to do if your baby has serious health problems. Rapp does such a good job incorporating every aspect of these kinds of decisions and her argument is extremely well rounded and inspiring.
The concept of control is woven in different ways in both texts. In the text by Dr. Seeman et al., unplanned pregnancies described as blessings “def[y] human planning and control” (30). One woman’s great-grandmother and religious community attributed this control as God’s decision for the woman to have a child, and for this reason it would not be viewed as a mistake (35). Like you mentioned, some of these pregnancies improved the lives of these women by getting them out of violent environments. Control had a very different meaning Rapp’s text. Control in this context meant the ability to test for certain genetic deviations, or deny amniocentesis entirely. For those who decided to undergo the procedure, they had lack of control to test for all possible conditions. Of course, there was also no control over what conditions the fetus did or did not have.
I thought your blog expressed the message of both texts well. I wish you had included an analysis on the disability rights movement in the context of pre-natal diagnosis. Robert Sinsheimer described “a new eugenics” as people advocating for “the right to normalcy” (38). Further, what is “normal” can be complicated by disabled individuals and their families not necessarily viewing their disability as society does. Overall, the concept of normalcy and genetic testing will become increasingly conflicted as more conditions become detectable by amniocentesis. This is because it is directly related to conditions many living Americans have and disability rights and pre-natal diagnosis rights can be in opposition to one another (Rapp, 50-51).
Kimberly,
Your blog provides a great overview of the main ideas of the readings for this week. I like how you talked about the distinctive perspectives on “limits” of prenatal testing for women of both Dr. Seeman and Rapp’s writings. Rapp’s argument on prenatal testing originates from her own amniotic experiences but put into a much larger social background composed on various views on the “limits” on has. The first chapter describing the methodology she has used for the research offers a strong foundation for her analysis of the subject matter. Rapp attempts to make her argument as holistic as possible not only by interviewing and observing women in medical settings and within their normal lives, but also by including accounts of medical professionals and family members. She further analyzes the tension existing between scientific meaning of heredity, a model of control, and popular conceptions and support. Your blog emphasizes the collective categories such as socioeconomic and racial that Rapp has found in her research; but it would be great if you include some discussion about the individual ethnographical narratives and how individual values play a crucial role in their decision making process. In contrast, Dr. Seeman’s article offers a specific account on cultural values in the African society that views unplanned pregnancy as a blessing, which well-compensates Rapp’s argument of “limits” determined by agencies and personal ideologies.
You summarized both readings very well and it was easy to follow. Rayna Rapp did extensive research on not only women that undergo amniocentesis but also mothers that have positive prenatal diagnosis. She also covers the enigma surrounding the disabled community and the difficult decisions that mothers have to make in order to make the right choice for their unborn baby. I think you could have elaborated more on how Rapp “strives to gain an omniscient understanding of women’s decisions to seek or evade prenatal testing” by giving a specific example. As other students have noted, the recurring question of whether or not using these available technologies are moral? Is a prenatal diagnosis, worth the risk of amniocentesis? It can cause loss of pregnancy and harm the fetus. On the second reading, I also wondered the same thing as you on the reading about young African American women finding comfort in the pregnancy that possibly caused them to be homeless.
Hey Kimberly,
I think you did a good job addressing all the major points in the article. At times, I got confused on what you were trying to argue or what topic you were explaining. Better sentence structure and a coherent essay outline could have helped your argument. In Rayna Rapp’s article, Testing Women, Testing the Fetus, she explains the social impact of Amniocentesis in America. She addressed the benefits, common misconceptions, reasons for one’s refusal of Amniocentesis. Dr. Rapp showed specific examples for why people would not participate in Amniocentesis such as religion, social, and cultural factors. I felt as if her examples consisted of people with one factor influencing their decisions. I feel these examples where somewhat narrow and did not accompany all the circumstances the average family uses to influence their decision. This mainly stems from her argument on male dominance. In today’s society, there are more children being born by single mothers than ever before. This is due to a change in social and cultural beliefs. Women, more than ever, have a voice in their sexual and reproductive health. Before these decisions where influence by male dominated society. I felt Dr.Rapp did not take these changing social- cultural factors into that much consideration. In addition, I felt Dr.Rapp’s examples portrayed people’s decisions as being influenced by one major factor that. This reminded me of an article we read in the first week. In this article, two men refused to put their names on the organ transplant list. Many physicians explained these individual’s decisions as being based entirely on religion. This author helps to explain that these types of decisions are based on an accumulation of factors. I see this same logic as being used in the decision to do or not to do Amniocentesis.
Kimberly,
You’ve done a great job of orienting the reader to the main points of the readings for this week, especially in your first paragraph. I really enjoyed how you synthesized both articles in the last sentence of your first paragraph: “Together these ethnographies illuminate the complexity of decisions made after conception and the religious, social, moral, medical, and ethical considerations…” That sentence articulates the main points of the articles succinctly; you made sure to cover main aspects addressed in the texts. One little note: maybe you could change “women’s decisions” to “a woman’s decision…”? It might just be grammar/semantics, but I think saying “women’s decision” seems to indicate you are employing a category of “women.” This assumes a collective sameness in their responses to reproduction/conception, when in fact the texts are highlighting just the opposite: rather, each woman demonstrates a nuanced and personal approach towards reproduction/pregnancy/testing.
I found your description on environments associated with facilities (that offer prenatal testing) to be quite helpful. The overall “feel” of a clinic (in its aesthetic design, cleanliness, and combined employee attitudes/professionalism) does indeed impact whether a woman may or may not want to carry out a procedure, especially one as sensitive as involving testing her unborn child. Your point on socioeconomic difference as a main driving force of this evident difference is quite noteworthy, and segues perfectly into Seeman’s article on “Blessing unplanned Pregnancy.” The quote you selected from the Seeman article is useful in capturing a key idea of the article, but perhaps you could have included more of a discussion on the term “blessing’ as it is central to how these young African American women view their “unplanned” pregnancies. Janine’s quote could be helpful in understanding how “unplanned pregnancy” is recoded as blessing: “I believe that children are a blessing. I believe He [God] blessed me, you know, with three babies, you know. It’s an honor to be a mom, you know, a mother, it is. And it’s an honor to be a father. It’s an honor to procreate, period, and I feel like I was selected as a chosen – you know, there’s people right now that can’t even have babies. You know, my, one of my best friends, you know, she had some intestinal issues, so I think for her to become pregnant will be hard, hard for her.” Overall, great work!
I think you made many great points in your blog post! I especially liked how you both summarized and tied Testing Women, Testing the Fetus and “Blessing Unplanned Pregnancy: Religion and the Discourse of Women’s Agency in Public Health” together. You did a fantastic job at synthesizing what you read and forming a well thought out introduction. You did an excellent job using your sources to support the claims you made. Specifically, I feel that your example of the two low-income hospitals (Middle Hospital and City Hospital) effectively conveys your claim of inequity within socioeconomic status and I appreciate how you tied in Professor Seeman’s article to discuss spiritual or religious beliefs as a factor that limits access. In your third paragraph, you ponder whether women’s acceptance of an unplanned pregnancy as out of their control as an extension of a survival mechanism used in everyday life rather than a religious barrier that limits agency. I found your previous statements compelling but felt that this particular statement could have used more clarification. For me, the readings and your analysis has provoked me to think more into the definition of religion. Instead of separating “an extension of a survival mechanism used in everyday life” and “a religious barrier that limits agency”, one might consider whether those are one and the same as I have observed that some use religion as a survival mechanism.
Kimberly,
I think you did a great job summarizing each article individually but I think your post would have been stronger if you had included an additional paragraph that solely focused on how the main themes of both articles fit together. Also, at times I found myself re-reading
a few sentences as they were confusing in structure or were too long to follow.
When I read your post, your reference to the example of Middle Hospital, City Hospital, and the disparities between the two made me stop to reflect. As a student interested in pursing public health, the ability to access health services is a major subject of interest for me. Typically, this conversation is centered around access to basic primary care. In this case, we are talking about prenatal testing –
a practice that is expensive, requires advanced technology, and skilled clinicians. Access to prenatal testing vs. something like primary or urgent care are two totally different arguments. I agree with you there are significant factors that will determining the prevalence of prenatal testing on the side of the patient, but I also think its important to consider the factors on the side of hospital and its providers – overall cost, the acquisition of advanced technology, insurance and liability expenses, total time spent with to a patient, etc.
Hi Kimberly,
Thank you so much for your well-written summaries for the two readings.
I specially want to focus and put emphasis on how the concepts of prenatal tests and unplanned pregnancies cannot be understood without addressing societal, religious, moral, medical and ethical implications, like you mentioned. In addition to your example about different outcomes of acceptance of prenatal tests in similar low socioeconomic status in two different hospitals, I want to add how middle-class women have different perspectives for the prenatal tests. Rapp mentions how some of middle-class patients usually don’t come for genetic counseling unless they are already determined to have the test, which meanings that they are likely to have prior (false/true) knowledge from outside sources. In addition, they tend to reject the test based on philosophical, ethical, or religious reasoning. For example, due to their beliefs, they could feel quite open to the possibly of raising a child with a disability. The reason that I am mentioning the point of views of both low and middle socioeconomic status women are because I feel that how unplanned pregnancies of low socioeconomic status women (African-American women) are viewed as blessings are basically the same reason that middle-class women refuses for prenatal testing. So whether they are low or middle-class women, the choices they make for their pregnancies can overlap, and no one can say one factor outcompetes another because they are all mothers.
Kimberly,
I thought your post was very well written and tied together the highlight topics both readings very cohesively. I was especially interested in your suggestion of Conflict Theory as applied to the women in Dr. Seeman’s paper. I agree that within lower socioeconomic classes there exists acceptant behavior’s related to life circumstance’s out of one’s control, and I too would challenge the notion that spiritual or religious responses to such circumstances serve as a barrier to one’s agency. Additionally, I would suggest that religious or spiritual practice serves as the actual survival mechanism through which an individual goes about coping with challenges outside of his or her control. More importantly, I think it is critical to emphasize the distinction between using religion as a survival mechanism and using religion as a fatalistic fallback. As the paper mentioned, “The contingency of blessing in these contexts… does not have to imply fatalism” (Seeman 43). Earlier this semester, we read Hamdy’s paper which described muslim men’s experiences with dialysis also made a point to draw a distinction between the fatalistic notion of religion and the religion as serving as a means to coping with a life-or-death decision. Although Hamdy’s paper is observing men who are taking agency over their health concerns and Dr. Seeman’s paper is observing women who are dealing with unplanned pregnancies, I think that in both cases, the patients utilize their spiritual practices as a survival mechanism that allows them to cope with and make sense of circumstances they feel helpless too. Both sets of patients are engaged with the ongoing circumstances, and even though the women more or less lacked the agency to plan the pregnancy, they did adopt some agency in reframing their perspective to do their best to take control of a circumstance they could have been helpless too.
This week’s readings were very unique, and I enjoyed the new perspective that they took. Before reading Testing Women, Testing the Fetus and “Blessing Unplanned Pregnancy: Religion and the Discourse of Women’s Agency in Public Health” I had no idea just how nuanced of an issue prenatal testing was. or the cultural significance of it. When I thought about the issues that pregnant woman may face when attempting to get prenatal care, I would have never thought about more than just the woman’s access to proper healthcare, but after reading these articles and book I realize there is much more that goes into the decision-making process. For me that was the big take away from this week’s readings. That there are multiple right answers when attempting to answer the question “what does prenatal care look like?”
I felt as though your summation of the works was done well but it did leave me wanting a little more. I understood what the readings were about, but I would have liked a little more of your opinion on them and what it was like for you to read them. I did, however, enjoy your last paragraph. I think it highlighted the relationship between a mother and her family, and how her priorities extend past her own health and the health of her fetus to other familial relationships. That is a point that can be hard to understand without having ever having lived through such an experience.