In class thus far we have discussed both kinship and views on Assisted Reproductive Technologies through the lens of different religions. These two topics go hand in hand because religious authorities always cite kinship cosmology when defining their position on ART. This week our focus is on women: we examine a woman’s approach to the process and the state of being pregnant and how this informs their experience in an increasingly complex medical system. We dive into a specific type of technology—prenatal testing—to highlight the differences that women have in their opinions and use of ART. It becomes clear that a whole slew of factors, from social to economic to religious to moral, determine these different approaches. As we will see, discourse in kinship cosmology and religious paradigm is undoubtedly woven into these conversations.
Rayna Rapp’s book, Testing Women, Testing the Fetus is an ethnography about the culture and practice of prenatal testing in the United States. Her methodology was strikingly similar to that of Susan Kahn in her book Reproducing Jews in that both interview all of the involved parties to gain a three hundred sixty-degree understanding of a certain practice. Not only did she interview women receiving prenatal testing, but she also interviewed genetic counselors, diagnosticians, and geneticists. She even divided that first category into women at all stages of testing: those who were deciding whether or not to have the test, those who refused it, those who tested and received a positive diagnosis, and those who already have disabled children whose births the test could have prevented. Rapp places the spotlight on women, as they are the “consumers” (34) of reproductive technologies and their stories deserve to be considered in the conversation about the ethics of, support for, and education on prenatal testing.
We also read an article from the Medicine Anthropology Theory journal titled Blessing Unintended Pregnancy written by Dr. Seeman, Iman Roushdy-Hammady and others. The authors conducted an ethnographic study on pregnancy in an underserved population in southeastern United States. The study participants were African American residents at Naomi’s House, a homeless shelter for struggling families. The researchers collected information about the participants’ religious views, their education and decisions regarding their pregnancies and reproductive health, and their spiritual upbringing. In this article the authors break down the notions of intention in pregnancy. They argue that dichotomizing intention as “intended” and “unintended” fails to recognize the complexity of decisions to and to not get pregnant. They find that often times women do not view getting pregnant as an individual decision, but as a life event destined by God.
Two major themes emerge from this week’s readings: agency and access. I will first discuss access. Dr. Seeman et al gave insight into a specific population: homeless African American women. In contrast, Rapp’s study covers a diverse demographic in socioeconomic class and ethnicity. When comparing these readings I couldn’t help but wonder how any of Rapp’s findings could possibly relate to the population from the Naomi’s House study. These women are most concerned with how to support their children, how to feed and house their families, how to make sense of a pregnancy that was perhaps forced upon them. Seeman et al cite an “inability to control central features of their reproductive experience” (38) as one of the reasons for pregnancies and poor reproductive planning in women at Naomi’s House. They are not the demographic seeking prenatal testing; this is likely not even a consideration for them. If testing isn’t a prominent concern in the first place, a discussion about access is irrelevant here.
However, if we assume prenatal testing is a consideration for all women, then we can consider access. Rapp states that Medicaid covers prenatal care, including prenatal testing. (170) Despite this fact, Rapp writes, “it is an axiom of genetic counseling that middle class patients (disproportionately white) usually accept the test while pooper women (disproportionately from ethnic-racial minorities) are more likely to refuse it.” (168) She says that the reason for this is because of the “environment in which [women] receive health care,” (168) meaning that the level of comfort an individual has in a certain medical environment is related to how likely they are to adhere to a doctor’s recommendations of prenatal testing. While this may be a limiting factor, what about everything that happens after the amnio? Let’s say all pregnant women are both scientifically literate and able to undergo prenatal testing; what about all of the resources required if the test is positive? Is abortion even a financial option? What about the resources needed to raise a child with disabilities? Is that a financial option? The majority of women from Seeman’s study, presumably, would not choose to abort for religious reasons. Whitney wouldn’t even get her tubes tied because “it wasn’t based in the Bible.” (34) So even if there is access to the consideration of the test and access to the test itself, is there access to dealing with its outcomes?
While these two readings address very real concerns in very different populations, there is one distinct commonality. Both conversations require a discussion of agency. Seeman et al write, “We believe that we are better able to make sense of our informants’ reproductive experiences when we turn our attention to what anthropologists have called ‘agentive capacities’ (Coole 2005).” (31) They go on to argue that often times agency is not an individual’s luxury. Many of the women in their study say that their pregnancy was a “life-affirming agency beyond their control” (31) and place the reasoning behind the even in a spiritual realm. This clearly muddles the line between “intended” and “unintended” because if one considers God’s agency in an individual becoming pregnant then of course all pregnancies are intended.
An interesting comparison can be drawn here between women not having agency in when they get pregnant and women not having agency in what types of reproductive technologies become available to them. Rapp writes, “as historian Ruth Cowan points out, it is often hard to spot the agency of women in the development of a technology for which they become consumers” (34). We can perhaps compare the introduction of new technologies as a kind of deterministic, God-like power to not only have kids, but also to have genetically perfect ones. Rapp writes, “across divides of class privilege, racial-ethnic or national background, and religious affiliation, many individuals hold mothers responsible for fetal quality and health.” (120)
- Does the presence of new technologies to bring perfect children into the world imply responsibility to use them?
- Can we draw a comparison between the obligation from God to take a baby to term (as he intended) and the obligation to test a fetus for imperfection, and terminate it if imperfections are found?
Both of our readings place a large emphasis on gaining an understanding of the individual—in this case the woman—before making a decision about intention in pregnancy and fetal testing. My lingering questions surround the topic of how best to fit anthropological findings into both quantitative Public Health research methods and in every day medical practice. Seeman et al write, “our engagement with women at Naomi’s House allows us to see that between the dichotomy of agency and constraint there lie other possibilities that have only rarely been described in public health literature.” (44-45) Rapp writes, “Despite a commendable commitment to abstract notions of distributive justice, the definition of “expert” is weighted toward representatives of powerful academic and humanist fields like philosophy, jurisprudence, and medicine.” (46) There seems to be a theme in these readings and in the class as a whole—a need for a more holistic approach to medicine.
- How do you quantify intentionality?
- Where does a discussion of “divine prerogative” (34) fit into a secular discussion about individual agency, particularly in a courtroom?
- Should everyday consumers be the ones deciding what technologies should and shouldn’t become publicly available, like Rayna Rapp is suggesting?
Hi Hannah,
Good job on the blog post! I really appreciated how you discussed the difference between agency in terms of becoming pregnant and agency in terms of using artificial reproductive technologies to become pregnant and/or modify pregnancies.
I would like to attempt to provide a new perspective to one of the questions posed in the blog post. Does the presence of new technologies to bring perfect children into the world imply responsibility to use them?
I believe there are a multitude of directions in which to approach this question. One perspective is that since we have the ability to utilize new technology to bring perfect children into the world, we should do so. Analyzing this question from the standpoint of religion, if G-d gave us the ability to use the technology, shouldn’t we use it? On the contrary, if we view all of G-d’s creations perfect in the state in which they are created (made in His image), then shouldn’t we trust that there is a reason for the natural qualities that we are born with?
I am not sure how to answer this question. There are many layers to it, but these were my initial thoughts on where to begin answering.
Thanks Jonah. How would you go about beginning to answer these questions? Give it a try!
Jonah,
I actually think about that type of question often, but more so how it relates to evolution. People say that being able to mess with and edit the genome is human beings “conquering” evolution. However, you could frame the argument to say that our brains evolved to be able to generate this type of technology. In that sense, the production of these technologies is just a continuation of evolution. A similar argument can be made about God…are technologies that allow humans to “play God” simply a product of his creation?
I think it is probably more manageable to not think in that way. Would you agree? Because that would mean that human beings can run rampant doing whatever they please and just say it’s God’s will. But where do you draw the line between a human creation that is God’s will and a human creation that isn’t? This kind if thinking kind of blows my mind.
Unit Five:
Hannah, your blog post was extremely informative and I really enjoyed the detailed descriptions you had on Rayna Rapp’s book. I would like to attempt to offer insight on the following question you posed: “Does the presence of new technologies to bring perfect children into the world imply responsibility to use them?”.
I personally feel that if the technology is available, it should be utilized, but on a case-by-case basis. The reason I mention “case-by-case” is because people have different religious views and differing levels of devoutness. For example, an extremely devout mother might feel her fetus was meant to be born with a genetic disease and see it as a means by which she was chosen to care for the baby. Individuals who are not extremely religious might feel otherwise though. It is also important to clarify that I feel there should be a counseling service, or some other means of communication, for the pregnant mother if her fetus is found to have a disease. This could potentially help the mother’s religious views be understood better and she could be given advice on how to care for the baby once born.
The question you posed is a tough one to fully answer, but those are the types of questions which enable others to form their own arguments and even ask more questions to themselves. I really enjoyed attempting to offer my own perspective on the situation.
Hi Petar,
As I wrote to some other commentators, why do you think individual choice should be paramount here? what about the social costs of different forms of reproduction? I am not suggesting you are wrong– just that you still need to justify your views.
Response for Unit 5
Thank you for the blog, I thought you did a good job I tying together the two readings we had for this unit. I do believe you may have missed a connection you could have made in the readings. You began to point out how Ranya Rapp believes the reason for poorer women to refuse the genetic counseling is due to their “level of comfort an individual has in a certain medical environment” (168). With this, you later question if these same women would even be able to deal with the outcomes, focusing on the financial possibility. I would first like to point out the fact that Rapp’s statement seems to be supported by Seeman’s et al article when going into the “mistrust of individual doctors but also generalized mistrust of the medicalization…” that has come from various negative encounters had by the Naomi’s House women with medical professionals. (40) I do not believe these women would want to go to the doctor for the amino tests, having been mistreated and disrespected by medical professionals in the past. Secondly, I would like to argue the women of this article would also refuse the technology due to their spirituality, as they view the pregnancy as a “blessing”. I also doubt they would get the testing nor change the fact to have the baby if they decided to get tested and received “bad results.” I interpreted the women thought of a child as a gift by God that they are to accept, despite the risks and challenges that could come, even with disabilities in the child. Having a child helped many of the women “start over, receive blessings, or triumph over adversity” (35). Thirdly, I would argue these women would deal with the outcomes, even the financial burden that comes with a child, as it “resonates with the commitment to ‘make a way out of no way’” (33).
Hi Paula,
You could be right about all of this, but the point of ethnography is that we won’t know till we ask!
Hello hannah. You’re blog was great, but I noticed a shift in a tone from last week. Prenatal testing was a reproductive technology that was largely decried by the Catholic Church in Donum Vitae (1978) and then again in Dignitas Vitae (2008), so it is interesting to move from an institutional overview to a far more in-depth, on-the-ground perspective.
Your analysis got me thinking about a medical lecture I sat in on at WashU in St. Louis some months ago. The topic of the lecture was about providing healthcare to minors, and when to start handing them autonomy over their own health from their parents. When the room was polled for what age they thought this shift could start, I thought 16-17 may be appropriate. The professor stunned me when she said that she starts giving some autonomy to children at ages 13-14. Even as a 21 year old who’s attending medical school in the fall, I still consult my parents for health-related issues. Rapp’s discussion of the agency and all other things held equal bit reminded me of the medical autonomy of minors—who has the authority to decide on medical access and for whom?
Another anecdote that is perhaps more explicitly related, in the book ‘Freakanomics,’ the author connects the Supreme Court case’s Roe v. Wade pro-choice decision with a tremendous drop in crime ~20 years later, and ties the drop to a reduction of “unwanted” pregnancies.
To respond to your question on “creating more perfect babies,” I think that’s a discussion is going on in with gene-editing CRISPER-Cas9. I believe that in a single-payer healthcare system, these technologies would not be disproportionally available to the wealthy as many technologies are in the United States (this point can be extrapolated to strongly differentiate most advanced technological and thus expensive medicine between the two systems). However, because of the United States’s commitment to capitalism, and therefore an inherent expansion of inequalities, the making of perfect babies would be unethical.
I am happy that we were able to peer into the daily ethnographic lives of people rather what people whose careers are religiously based. I ascribe more weight to this concrete description and analysis rather than the abstract rules and recommendations of an institution. All in all, your blog was very detailed and thought provoking.
Hi Ayman. Very provocative as usual. A few questions. Why is it unethical for people with capital to use it to improve their or their children’s lives? Do you think it is unethical for them to pay for an expensive private college or a big house etc? I would like you to unpack this a bit. Is there a thresshold at which inequality becomes injustice or do you think all inequality is injustice, and what is the basis of your reasoning in either case? With respect to the issue of patient automony, it would be useful to know what the doctor had in mind. I doubt the autonomy of a 13 year old would stand up in court.
Ayman–thanks for your response. Are you saying that editing technologies would be readily available to anyone desiring to use them? If this was the case, and they were not disproportionately available to the wealthy people with capital (as Dr. Seeman said below) and were available to everyone, would everyone use it?
I argued in my blog that some people don’t even have the luxury of considering testing for the health of their fetus during pregnancy–nevermind testing for and editing out genetic diseases. Also consider those who are not scientifically literate and wouldn’t even know these technologies are available or what they do. If this technology was free, do you think there would still be a stratification in who would use it?
On a different note, speaking of autonomy, in my response to Kristin’s comment on my post I offered this conundrum:
What if a mother decides to bring a baby to term who perhaps is predisposed for, say, Huntington’s, and then when the baby is an adult she finds out that the parents knew she would have this disease but had her anyway. What does that mean for the person then having to deal with–suffer with–the disease? Are the parents then responsible for medical treatment and management? Is this what you meant by long-term implications?
So does the fetus have any type of autonomy over its care? Would that be relevant in the discussion you sat in on at WashU?
xxoo
Unit 5:
Hi Hannah,
Really enjoyed reading this, especially your comment about a more holistic approach to medicine at the end. One thing I thought was misleading in your phrasing when discussing Whitney’s tubal ligation was that she actually did get her tubes tied “despite her ambivalence” (34) — I thought the point made there was that while she recognized the act as being “unbiblical,” her ultimate decision to go through with it contradicted this belief, highlighting a level of unpredictability in women’s decision making even under the influence of religious doctrine.
Your question of whether we have a responsibility to use new technologies to bring perfect children into the world was fascinating, and it immediately reminded me of the section of Donum Vitae that discussed eugenics and the potential dangers of not restricting use of this technology. I personally do not mind using this technology for screening of diseases that might threaten both the mother and the baby; however, I do not agree with termination of pregnancy unless it threatens the mother’s life, notably because in my eyes a child is a blessing and should be protected from conception, even if it means being born with one or multiple disabilities. The mothers from Naomi’s House recognized that their motherhood “provided a context to start over, receive blessings, or triumph over adversity” (35). Moreover, they were able to redeem their struggles with the gift of life. Although, in my religion class on death and dying last semester, the discourse on “Death With Dignity” or “Physician Assisted Suicide” has sparked a huge debate amongst disability rights organizations and has also made me question the long-term implications of pre-natal testing.
Thanks Kristin, this is a very thoughtful response and I would like to come back to it in class. But let me push you a little to articulate what you mean by saying that a child or foetus is a blessing. is there any way of articulating that claim outside the confines of a particular kind of religious language, and is that an important thing to do where policy is concerned? Also, when you say that you do not agree with termination, do you mean that as a personal statement or a public policy statement? And would you feel differently if we combined these two readings to ask about babies with genetic disabilities born to mothers without basic means of caring for them? Finally, why is the life of the mother the defining feature for you? Does that imply that the foetus is not, for all that, an independent person such as a child, for whom I do not think we would make that exception?
Hi Kristin!
Thanks for the clarification; you’re right I definitely read that the way I wanted to so it fit into my argument.
I am curious about what you mean by the long-term implications of prenatal testing. Your mention of that phrase got me thinking about whether this testing is denying certain rights to the fetus. I know that that sounds ridiculous, but consider this example: what if a mother decides to bring a baby to term who perhaps is predisposed for, say, Huntington’s, and then when the baby is an adult she finds out that the parents knew she would have this disease but had her anyway. What does that mean for the person then having to deal with–suffer with–the disease? Are the parents then responsible for medical treatment and management? Is this what you meant by long-term implications?
I am also interested to hear how Physician-Assisted Suicide ties in here, if you have time to elaborate on that. Thanks!
Hannah, I thought the questions you asked within your blog post were very interesting and made me consider the readings from a slightly different perspective. Regarding the presence of new technologies and the woman’s responsibility, I think that is a hard question to answer. On one hand, if these technologies are available I don’t necessarily see harm in using them. Negative prenatal testing outcomes don’t always have to lead to termination, rather they could help mothers prepare for if their child were to have a disability. However, I think many people assume that because someone chooses to use prenatal testing, they are attempting to have control over the outcome of their child, as some would say, playing God.
That being said, I don’t think a woman has any obligation in either way. I don’t think she is obligated to test the fetus or terminate it if imperfections are found. So while I do think a woman is responsible to take care of the fetus, I think that is a responsibility based on the choice to have a baby. But, I don’t think the woman is responsible to undergo prenatal testing if she does not want to use the technology.
I appreciate your opinions, but you have not described why you hold them or what goes into them? Would you feel differently if this was framed in terms of the social cost of bearing children with genetic disabilities? Why are “rights” so fundamental to your world view?
Unit 5
Hannah-
I thought you made an interesting point about intentionality. As many of the women said, it was God’s intention for them to have a baby, which is misleading because generally it happened against the intention of the woman or couple. Concerning your question about consumers deciding which technologies should and shouldn’t be available, I think they should not be the deciding factor, but should undoubtedly play an important role. This goes back to Dr. Seeman’s idea about the need for a much more holistic approach in medicine. Taking the consumers into account is a part of this better understanding. Great job!
Petar-
I do agree that there is sometimes a lack of connection between patients and physicians. While unfortunate, this is almost necessary. Doctors deal with all kinds of patients all the time, and if they seek connections, while it can be beneficial to do so, it also can be detrimental. Things go wrong in medical procedures. When they do, if a physician has become too connected to his or her patient, that loss can have a huge effect on the psyche of the physician. This is certainly not an excuse for a lack of connection, and something should be done so that patients and physicians can connect while not harming the doctor. I also think that blessing in this case refers to a pregnancy that while unplanned, ended up revealing a bigger truth. Many of the individuals interviewed in Dr. Seeman’s article talk about how they were not planning on getting pregnant, but getting pregnant led to an important change in their lives, such as going back to school, getting out of an abusive relationship, or quitting drugs.
Sai-
I found your final discussion question particularly interesting, concerning whether or not prenatal testing was important if the women do not have access to subsequent procedures. I guess, if there is nothing that the woman is able to do about the results of the test, there are two options. 1) Increase healthcare coverage so that the subsequent procedures are available. 2) Not have the test done at all. This would allow for some risks to be avoided with the test, and also to decrease the stress of the woman with the pregnancy.
-Ben
I appreciated your responding to all of the blogs, thanks. Why do you think that greater connection to patients would harm doctors? Is that intuitive to you or have you read/encountered something to that effect? Let’s make sure we are clear when we are speculating!
I came across this idea from personal experience, and then applied it to physicians. I know that when I personally get emotionally involved in something, if it does not go my way, it is a much more difficult to pick myself up after the disappointment. I would think that the same would apply to doctors. If they are emotionally committed to the success of a pregnancy, then if the pregnancy fails, they could put the blame on theirselves, which might inhibit their judgment for the next procedure. I believe this would apply to not only pregnancy, but all forms of medicine.
Hi Hannah,
I very much appreciated your careful commentary. Personally, I liked this style better than your more informal style last week, but I suspect your student colleagues may feel differently? let us return in class to the question of intentionality you raise here as well as the role of religion in “secular” discussions. What makes a discussion secular or religious and what is at stake in those determinations?