Module 4; Melissa Cook

Summary of Testing Women, Testing the Fetus

In Testing Women, Testing the Fetus, Rayna Rapp discusses the social impact and cultural meaning of prenatal diagnosis which is one of the new reproductive technologies. Prenatal diagnostic technologies including amniocentesis are used to screen fetuses for chromosomal anomalies and neural tubes problems during the early period of pregnancy. They are routinized in the United States and women, especially those who are over age 35, take the tests. As an anthropologist and a feminist activist, Rapp introduces the history of amniocentesis and shows how related people think about prenatal testing by using standard anthropological methods of participant observation.

In general, a woman experiences pressure of multiple responsibilities especially when she considers herself both as a mother and an individual. This is one of the examples that Rapp used in her argument. While facing a moral and critical life question, women often struggle with prenatal testing and their decisions after they get the testing results. It is because they are socially trained to play the “proper” roles as mothers. Another main argument that Rapp discusses is the communication of risk. She explains that the reason why people perceive prenatal testing differently is because they are not all from the same environment and cultures. For instance, depending on their cultural or religious backgrounds, people may go through different processes of making decisions to keep or end pregnancy. In addition, Rapp explains that communication of risk is the result of stratified reproduction. She states that “Reproductive futures are embedded inside other forms of hierarchy: Access to respectful, competent prenatal   care, eugenic attitudes toward “excessive” or “wasteful” pregnancies, and financial and social resources for differently abled children are socially stratified in familiar patterns.” (Rapp, 311). Because the social hierarchy allocates resources unequally to each stratum, it is more likely to bring about differences in scientific literacy and, as a result, different ways of understanding prenatal testing and its results.

In my opinion, this book was a meaningful attempt to analyze the social impact and cultural meanings of prenatal diagnosis from the perspectives of many different kinds of people. Her observations and interviews are extensive: she met genetic counselors, geneticists, laboratory diagnosticians, pregnant women who accepted amniocentesis and those who refused it, women who received a positive diagnosis and chose to end their pregnancies, and families with children who have conditions that the test can now reveal before birth. Among the first-hand observations, it was particularly impressive when she described the pressure and dilemmas that pregnant women had to cope with when they received the testing results. I think it is because the observer, Rayna Rapp, seemed to deeply sympathize the interviewees when they shared their experiences. As a mother who had to make a courageous decision for XYLO, her family and herself, I think she has made it true that endings are really beginnings.

 

Summary of The Burden of Knowledge

The Burden of Knowledge is an interesting video that shows both positive and negative sides of prenatal testing. While watching this video, I kept asking myself about the meaning of “the burden of knowledge.” Since I used to think that knowledge is good, “the burden of it” does not make a sense to me at the beginning. After watching a series of interviews in the video, I got to understand that “the burden of knowledge” indicates the enormous fear and pressure when a pregnant woman get the results of prenatal testing which is essentially probabilistic.

In this video, many women express their anxiety while waiting on the results from prenatal testing. As commented in the interview, the prenatal testing can be emotionally difficult for a pregnant woman because she can actually feel the connection with the baby. Although I cannot imagine what it would be like, this connection makes her struggle even more when aborting a pregnancy is suggested as a better way for her and her baby than keeping it. On the contrary to the worries of mothers about the possibility that their children may go wrong, Aubrey Milunsky claims that compared to the “chaotic” outcomes that children with disabilities will be brought into a life of pain, it is better to cope with anxiety that results from prenatal testing. According to him, “there may well be some anxieties, but when ultimately one compares these minor anxieties to the literal chaos of a lifetime that results from the absence of such testing or the opportunity of such testing and life for the child with serious handicap thereafter, there are no comparisons whether you admit it.”

This video also makes us to think about how to understand disability. A female interview in the video states that “technology has evolved and is being offered to individuals with the implicit assumption that the technology will be used to eradicate people with disabilities.” Right after her comment, the video shows a contradicting statement coming from a different perspective that people fail “to recognize that many people with disabilities suffer, have pain, and repeated surgery.” The video points out that the advances in reproductive technologies may decrease our pain of suffering from birth defects, but also raises important questions about eugenics. It was interesting when one of the women in the video talked about her wish for having known the options other than abortion, such as giving the baby up for adoption. What she said sounded like her decision could have delivered her baby if she had known about the adoption before aborting, even though the fact that the baby had to live with Down’s syndrome did not change.

Overall, this video made me think about what I would choose if I were in their shoes. It was also  interesting to know that people have different priorities and may respond differently to the knowledge on prenatal testing.

The social impact of amniocentesis and its meaning

Let me ask you quick questions. Imagine you are making an awesome plan for a trip with your best friends. Your insurer with a good intent (let’s believe it for a moment!) is telling you that she can give you a useful prediction of the risk you and your best friends may encounter during the trip. Are you going to get it? Let’s say you get to know that there is a 70% of chance that some awful accident may happen during the trip. Let’s suppose that you really want to go on a trip (you can’t make any changes that may cause that terrible accident) and the 70% is a quite good prediction based on probabilistic thinking like a blood test result. If going or not going is your only choice, will you still go on a trip? Although the context is different, this is conceptually similar to the problem that is discussed in Testing Women, Testing the Fetus and The Burden of Knowledge. If you are a 35-year-old pregnant woman before the second trimester, will you take the prenatal testing? If you take the test and find out that the baby has a 70% of chance to have Down’s syndrome, will you keep a pregnancy? What if the chance is 90% instead of 70%?

 One of the things that The Burden of Knowledge made me to think about is reproductive consciousness. It made me to question myself on whether it is better to be informed of my child’s probability of getting disability through prenatal testing or is it better not to know about this information at all? Will it be better to know if the probability is high? What if the chance is only 20%? Will it not matter because the number is too low? When I asked a series of questions to myself, I could not come up with answers immediately. Imagining that it is real and trying to answer to the questions was literally burdensome. However, I made up my mind to gain the information from prenatal testing and be aware of all the possibilities. I think it is important for people to know what situation they are in because this might help them to protect themselves from what may come up ahead. Without any information, there are not many options because of ignorance. Regardless of what would be their ultimate decisions, I think it is better for mothers to take prenatal testing and have information in their hands so that they can arrange and prepare the best decision for themselves and their babies.

This reproductive consciousness is one of the factors that leads to stratified reproduction. Because people come from diverse culture and environment, their “risk” is perceived differently from one another. There are many factors which lead people to have different perception of prenatal testing such as education, experience, religion, age, economic status, and such. Depending on the level of education people receive, they may have different attitudes toward and interpretation of prenatal testing. For instance, people who have more medical knowledge and are used to probabilistic thinking may be more capable of making better decisions of taking prenatal tests and dealing with the test results. As illustrated in the book, “an African-American public school teacher had to convince the staff at her local City Hospital that she wanted an appointment for prenatal care, not abortion, when a late, unplanned pregnancy was diagnosed; a sibling of an adult with Down syndrome felt pressured into having amniocentesis by her obstetrician’s attitude toward mental retardation” (Rapp, 311).  As a result, people may have different opinions on prenatal testing because of different access to some resources. In a stratified society, there are limits to who can, cannot, have access to certain resources and people are situated in different circumstances. That is, due to different levels of scientific literacy, advanced reproductive technologies may result in stratified reproduction.

Amniocentesis makes pregnant women become “moral pioneers” because it places them into a situation where they have to make one of the most crucial decisions in their lives. They would feel guilty and unimaginably big pain to abort pregnancies because they have special connections with the baby. Moreover, amniocentesis leads women to raise moral questions which include the ones regarding their babies’ lives. If the baby is highly likely to be born with serious (or even life-threatening) disability, it is wise for mother to keep a pregnancy? I do not think that there is necessarily a right or wrong answer for this because there are too many things to consider and women must have different (but important) reasons to keep or end their pregnancies. I think that amniocentesis is useful. Nevertheless, if I have a fetus that has a prenatal defects that is only limited to physical health but not mental, I would not abort the baby. It is because I think there is still hope that I am obliged to show the baby a good part of life and live with it. Disability may make us suffer, but isn’t pain a part of our life? I want to quote a sentence from the book and conclude my short writing. “Thus, a limit might be drawn by articulating individual experience and values as, for example, when the mother of a child with spina bifida accepted the possibility of bearing a second one with the same condition with confidence and determination, but refused the possibility of down syndrome or any other condition involving mental retardation” (Rapp, 308).

Sources:

Rapp, Rayna. Testing Women, Testing the Fetus : The Social Impact of Amniocentesis in America, Routledge, 2004.

The Burden of Knowledge: Moral Dilemmas in Prenatal Testing. Dir. By Wendy Conquest, Bob Drake and Deni Elliott. Distributor: The Fanlight Collection, 1994. Docuseek2. Web. 5 Jun 2019.