The exponential growth of technology offers parents additional information about a pregnancy, and more significantly, provides them the ability to terminate in order to avoid suffering. Rayna Rapp’s book, Testing Women, Testing the Fetus, presents the research she conducted regarding amniocentesis and the social effect of this prenatal test. Rapp analyzes the role religion, socioeconomic status, ethnicity, and reproductive and familial history have on a woman’s decision of whether to undergo amniocentesis and how she will respond if she receives a positive diagnosis.
While Rapp includes the emotional and mental strain these decisions place on a woman, this is further explored in the film The Burden of Knowledge. The film provides crucial insight into what the experience of amniocentesis entails emotionally and morally. Some individuals claimed the existence of the test and being forced to make a decision was more anxiety provoking than it would have been if the test did not exist at all. A key difference between these sources is that unlike Testing Women, Testing the Fetus, the film did not specifically focus on the implications of social and economic factors regarding one’s experience with prenatal testing. Socioeconomic factors affecting healthcare during pregnancy and one’s decision are equally important to the overall emotional stress caused by amniocentesis which will both be further explored and discussed.
Amniocentesis is a prenatal test that screens for chromosomal abnormalities between the 15th and 20th weeks of pregnancy. It is performed by extracting amniotic fluid from the uterine cavity via a needle, and the chromosomes of fetal cells are analyzed through karyotyping. Socioeconomic differences, especially pertaining to education and scientific literacy, become evident as misunderstandings greatly influence the decisions and experiences of varying individuals. While the white middle class may view genetic counseling as a waste of time that provides no new information, those of lower economic status and varying ethnicities are often shocked to hear about this test. This population is often unaware of the genetic component to many diseases and struggles to understand the scientific aspect essential to interpreting a diagnosis. Thus, background differences have a significant impact on one’s experience from before they even arrive to a counseling session.
Before reading Testing Women, Testing the Fetus, I was familiar with the process of the test and believed it screened for serious abnormalities including fatal diseases. What I had not realized was how limiting a chromosomal analysis truly was, and that instead of screening for the medically severe conditions I had pictured, amniocentesis is almost exclusively testing for Down’s Syndrome. Rapp emphasizes the lack of conditions amniocentesis can diagnose. The majority of “positive diagnoses” are for Down’s Syndrome (trisomy 21), despite also testing for the trisomy of the other chromosomes and abnormalities with sex chromosomes. Because of this, amniocentesis is predominantly screening for disabled fetuses rather than fatal conditions. As a result, the ethical issues skyrocket as we are no longer discussing the intensity of pain and suffering of a fetus with a fatal disease, but instead whether to allow the existence of a disabled fetus. This quickly becomes a disability issue and a decision to terminate is discriminating against the disabled when viewed from the disability community.
Studying the effect on culture regarding the decision to end a pregnancy following a positive diagnosis becomes extremely complex as views on disability and a woman’s right to choose can vary dramatically. According to Rapp, many women who practice Christainity felt that abortion was a sin, yet for a positive diagnosis there was an exception. Whether they believed it was an exception in the sense that they would be forgived or rather that they were in a severe enough situation that they needed to terminate regardless of the general belief of abortion likely depended on the woman. To cope, many viewed their own as a “good abortion” opposed to those who didn’t want to be a mother at all which they labelled as a “bad abortion.” Interestingly, many religious women felt such immense cultural pressure to never abort that they planned to lie and claim to have had a miscarriage. I was shocked to realize how easily this could be done to avoid the intense stigma.
In a drastically different sense, many women believe that one should have the right to choose whether they want to be pregnant, but to decide based on disability itself is unethical. It was then reasoned that it is acceptable to make the decision based on a woman’s situation, but not acceptable to decide whether you want that specific fetus. One woman felt more guilty having a selective abortion opposed to others she had previously because it was a pregnancy she wanted. Therefore, it is viewed as worse to get out of a pregnancy that is intentional because of not wanting a disabled child than it is to simply not want to be pregnant. There is also a cognitive dissonance between acknowledging that selective abortion is in a way discrimination while also believing many individuals are not able to handle raising a disabled child in the way that would be needed. While accepting that selective abortion sends a negative message about the value of a disabled life, it is also known that many do not have the finances, resources or will to support a disabled child.
Deciding whether or not to have a selective abortion is emotionally gruelling and relies on cultural and personal experiences as reasoning. Often, individual experiences with disability in the family determined whether a couple believed they could handle raising a child with a disability. Additionally, such experiences often determined their beliefs on a particular quality of life. Gender roles had an explicit contribution to several decisions to have a selective abortion. One man was against abortion, but said his wife will be the one responsible for caring for the child day to day and thus he must leave the decision up to her. Another woman decided to have a selective abortion because she believed it would be incredibly unfair for the responsibility to fall on her daughter when she passed away. In the film, The Burden of Knowledge, several couples express the emotional distress they experienced in their decision to terminate, during the termination, and while trying to heal afterwards. Despite over 90% of positive diagnoses resulting in selective abortion, The Burden of Knowledge provided insight in those who decided to continue with the pregnancy. Ms. Baker was confident in her decision to continue the pregnancy and received backlash from a counselor who made claims regarding a lesser quality of life. Baker successfully articulated the ableistic nature of the counselor’s claim. According to Rapp, many women experienced the assumption from clinicians that they would be terminating and were met with inappropriate and unprofessional resistance when they decided not to. While the determining reason varies among individuals with varying cultural and personal factors, the decision following a positive diagnosis is emotionally charged on behalf of both the prospective parents and the clinicians/counselors involved.
The author’s purpose in conducting the research for and writing Testing Women, Testing the Fetus was exceptionally fascinating as she had previously received a prenatal positive diagnosis for Down’s Syndrome and decided to terminate the pregnancy. While I do believe a significant component of her research truly was to understand how culture impacts decisions regarding amniocentesis, I was constantly wondering if her personal experience caused any biases during her interviews or if her research was partly motivated by doubt in her decision. I wondered whether she was looking for validation, or even if any of her experiences made her regret or doubt her choice.
Rapp discusses her close work with the Down Syndrome Parent Support group and briefly mentions bringing her nondisabled child from a later pregnancy to Down Syndrome awareness events. This involvement made me question if Rapp felt remorse in her decision. Would the information and resources she now has lead her to choose differently? I was also curious about who was informed of her prior experiences. Do those from the Down Syndrome Parent Support group know, and if not, would they be offended and judgemental? Was Rapp transparent about her experience and decision with those who she interviewed while they waited for results or were struggling to make a decision? Would knowing Rapp’s decision influence their own? Is it deceitful to listen to women struggle to decide without disclosing her own experience? While many of my questions regarding Rapp’s purpose and motivation remained unanswered, she leaves one final statement of her experience in her last paragraph. Rapp dedicates her work to their fetus, which they refer to as XYLO, and believes that the inspiration to help others explore these issues is the “gift” that came from XYLO’s life and her own experience. Despite some ambiguity, Rapp does not appear regretful and seems to have made peace and healed from her own experience.
The lack of an explicit tie between amniocentesis and an inevitable fatal medical condition results in the predominate use of screening for disability. Already, an ethically ambiguous zone has been entered that forces women to make a commitment amidst a moral dilemma. Regardless of the varying influences that socioeconomic, religious, and cultural factors have on that decision, the experience is emotionally taxing. Testing Women, Testing the Fetus and The Burden of Knowledge provide incredibly valuable insight regarding how people cope and ethically reason with the dilemmas associated with amniocentesis.
Works Cited
Rapp, Rayna. Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America. Routledge, 2000.
“The Burden of Knowledge.” The Fanlight Collection, 1994.
Samantha eloquently reviewed the overlaps and differences between Rayna Rapp’s book, Testing Women, Testing the Fetus, and the film, The Burden of Knowledge. The advent of reproductive technology, especially health-regulatory mechanisms like amniocentesis, created perplexing ethical dilemmas. Often in American law, politics, and practices, we orient our behavior with stare decisis, to stand by things decided (essentially just precedent). The interest in biotechnological ethics is amply interesting because we lack the historical background from which to substantiate our claims. However, this lack of precedent is also advantageous in that we are able to more readily shape current ethical practices to contemporary national/cultural identities and values. Clearly, the ethical quandary between selective abortion and parental capacity (among many others important factors), rests on the apex of this phenomenon.
This debate is one that I have never fully been able to garner a complete, substantiated opinion on (whether from ignorance or otherwise). Being ardently pro-choice, I firstly prioritize the will and autonomy of the individual who is carrying the fetus. With that said, the idea that neurologically atypical/developmentally atypical individuals being systematically (eugenically) cleansed out of the gene pool is at the forefront of ableism in reproduction. While the context and nuance behind the personal choice are critical (socioeconomic background, willingness, ability to care for the child appropriately and sufficiently) having a child with non-life-threatening disabilities should not be the determining factor in selective abortion.
Lastly, I also found that Sam’s comments on the potential biases of Rayna Rapp echoed many of my same questions and concerns upon reading. Firstly, while her personal experiences with selective abortion and amniocentesis alike are inextricably linked to her ethnographical work, I would maintain that they do not lessen the validity of her research whatsoever, however they are certainly informed by it. More notably, I found Rapp’s personal story to be an interesting magnification of the larger themes in the book: the ways in which participants in pregnancy, and their identities — religious, racial, ethnic and socioeconomic — rationalize the use or disuse of technology in reproduction and termination. I would be very curious to hear more about my classmates opinions on the ethics of selective abortion in cases such as the ones mentioned, or generally the ethics of reproducing at all. Great post Sam!
Samantha well combined her own experience and understanding of genetic testing and the author’s ethnographic work to show the issues behind prenatal testing, abortion, and disability.
I agree with Samantha that socioeconomic factors largely influence how different (social/cultural) groups view and understand prenatal testing, and how the result influences their decision of abortion. As Rapp states, people with low levels of health literacy and education will receive less amount of scientific information compared with their more educated peers, which disadvantages them. In addition, different socioeconomic groups have different interpretations and perceptions of the same statistics and risk, based on their own experience and culture. Besides what Samantha mentioned (i.e. people from lower socioeconomic status may not be aware of the genetic cause of many diseases), their own history and experience also may make it hard to generate useful or accurate results from the test. For example, on page 74, Rapp illustrates that many Haitians do not know their family histories of heart and kidney diseases because these conditions are often unreported or unnamed in their country of origin. They also may leave home at a young age and lose contact with families, which leads to unknown familial histories of diseases. These ambiguous answers in genetic counseling may cause inaccurate or equivocal results, complicating the counseling process.
Like Samantha said, I am also surprised to find that amniocentesis is conducted primarily for Down’s Syndrome. This conveys negative messages towards the population with Down Syndrome and their families, indicating that their existence is undesirable and should be removed from society. It also ignores the diversity of disabilities and suggests a sense of perfectionism and discrimination against the disabled.
When reading the book, I also have the same question as Samantha did with regard to the objectivity and reflexivity of Rapp in her research. I think maybe she could explain and reflect more on her own experiences and considerations when making the decision, and how her research has influenced her own view of the previous decision.
Samantha’s summary of the similarities and differences between Rayna Rapp’s book ‘Testing Women, Testing the Fetus’ and ‘The Burden of Knowledge.’ The ethical dilemmas that arise when discussing reproductive technology, including amniocentesis, are of great controversy today. With the increase of selective abortion and meticulous evaluation of a parent’s capacity to take care of a child, much of American law is also trying to increase their power over reproductive rights.
Abortion, disability, and prenatal testing are all addressed well by both Samantha and the author. I agree with Samantha that someone’s socioeconomic status greatly affects their view on abortion and their understanding of prenatal testing. Lower socioeconomic status puts many people at a disadvantage and often leaves them with the only viable option for their circumstances: abortion. Being pro-choice, I can fully understand the decision to receive an abortion if the parental capacity to take care of a child is absent or their socioeconomic status prevents them from getting sufficient care. Protecting the autonomy of the individual to make their own decisions is something I greatly value. Despite this, in the discussion of pre-natal testing for disability it’s difficult to find the line between autonomy and eugenics.
I wasn’t incredibly surprised to learn that amniocentesis is conducted mostly for children with the potential of having Down’s Syndrome. Many parents nowadays who have access to pre-natal testing want to know before having the child if they need to financially prepare to have a child with Down’s Syndrome. In addition to financially preparing, many parents may also use selective abortion when faced with their child’s Down Syndrome diagnosis, something that the disability community greatly detests.
I thought that Samantha did an excellent job of summarizing the ethical dilemma of amniocentesis. On one hand, it makes sense that parents from low-income backgrounds or with other significant obstacles to raising a child with Down’s Syndrome might choose to have a selective abortion for a fetus that tests positive for trisomy 21. On the other, I can see how allowing parents to selectively abort fetuses with disabilities such as Down’s Syndrome could perpetuate the structural oppression of people with disabilities by normalizing ableism. Personally, I think that it is always a woman’s right to choose if she will abort a fetus. In the context of pre-natal testing and selective abortion, I think that women are best able to distinguish their ability to care for a child with disabilites in the context of their personal lives, culture and socioeconomic status.
I also thought that Rapp’s work could have potential personal bias due to her personal choice to selectively abort a fetus that tested positive for disabilities. I think that sometimes it is difficult for researchers to not “cherry-pick” data that supports their claims. However, I think that Rapp’s ethnographic approach connects her own personal experience with selective abortion to her wider research on the subject, perhaps enabling her to better understand interviewee’s responses to questions about their personal lives.
Samantha’s post does a phenomenal job in capturing the prominent ideas outlined in Rayna Rapp’s book, Testing Women, Testing the Fetus and within the film The Burden of Knowledge: How do mother’s experience and respond to prenatal testing; how is this experience contextualized by lived experience, social structure, and cultural meanings of values, control, and authority. Access to care and prenatal testing is the primary factor with variables of environmental conditions and genetic conditions.Social structure and the socioeconomic hierarchy burden a women’s ability to seek care/ testing. This determinant of health gives people with greater access to care more control over their reproductive decisions; favorable environmental conditions (ie.favorable SES) yields greater authority over genetic conditions — less contingency. Also, Lived experience of suffering and stigma manifest in women’s decision to seek testing and or terminate the pregnancy. Unlike Samantha, I was not shocked to learn that mother’s would lie to avoid judgment surrounding their decisions; social exclusion is a powerful variable that confounds the majority of our decisions — Inequity and oppression are rooted in social exclusion.