{"id":35,"date":"2021-03-17T18:18:55","date_gmt":"2021-03-17T18:18:55","guid":{"rendered":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/?p=35"},"modified":"2021-03-17T18:18:56","modified_gmt":"2021-03-17T18:18:56","slug":"cultures-of-testing-the-moral-dilemmas-of-prenatal-testing","status":"publish","type":"post","link":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/2021\/03\/17\/cultures-of-testing-the-moral-dilemmas-of-prenatal-testing\/","title":{"rendered":"Cultures of Testing: The Moral Dilemmas of Prenatal Testing"},"content":{"rendered":"\n

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\u2019s book, Testing Women, Testing the Fetus,<\/em> 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\u2019s decision of whether to undergo amniocentesis and how she will respond if she receives a positive diagnosis. <\/p>\n\n\n\n

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<\/em>. 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<\/em>, 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\u2019s decision are equally important to the overall emotional stress caused by amniocentesis which will both be further explored and discussed.<\/p>\n\n\n\n

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. <\/p>\n\n\n\n

Before reading Testing Women, Testing the Fetus,<\/em> 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\u2019s Syndrome. Rapp emphasizes the lack of conditions amniocentesis can diagnose. The majority of \u201cpositive diagnoses\u201d are for Down\u2019s 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.<\/p>\n\n\n\n

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\u2019s 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 \u201cgood abortion\u201d opposed to those who didn\u2019t want to be a mother at all which they labelled as a \u201cbad abortion.\u201d 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. <\/p>\n\n\n\n

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\u2019s 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.<\/p>\n\n\n\n

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,<\/em> 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<\/em> 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\u2019s 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.<\/p>\n\n\n\n

The author\u2019s purpose in conducting the research for and writing Testing Women, Testing the Fetus<\/em> was exceptionally fascinating as she had previously received a prenatal positive diagnosis for Down\u2019s 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. <\/p>\n\n\n\n

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\u2019s 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\u2019s 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 \u201cgift\u201d that came from XYLO\u2019s 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.<\/p>\n\n\n\n

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<\/em> and The Burden of Knowledge<\/em> provide incredibly valuable insight regarding how people cope and ethically reason with the dilemmas associated with amniocentesis.<\/p>\n\n\n\n

Works Cited<\/p>\n\n\n\n

Rapp, Rayna. Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America<\/em>.\u00a0Routledge, 2000.\u00a0<\/p>\n\n\n\n

\u201cThe Burden of Knowledge.\u201d The Fanlight Collection, 1994. <\/p>\n","protected":false},"excerpt":{"rendered":"

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\u2019s 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… Continue reading Cultures of Testing: The Moral Dilemmas of Prenatal Testing<\/span><\/a><\/p>\n","protected":false},"author":7209,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-35","post","type-post","status-publish","format-standard","hentry","category-uncategorized","entry"],"_links":{"self":[{"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/posts\/35","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/users\/7209"}],"replies":[{"embeddable":true,"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/comments?post=35"}],"version-history":[{"count":2,"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/posts\/35\/revisions"}],"predecessor-version":[{"id":37,"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/posts\/35\/revisions\/37"}],"wp:attachment":[{"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/media?parent=35"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/categories?post=35"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/scholarblogs.emory.edu\/religionandbioethicsspring2021\/wp-json\/wp\/v2\/tags?post=35"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}