Categories
Uncategorized

Prenatal Testing and the Multi-layered Dilemma

The film “burden of knowledge” explores the moral dilemmas arising from the spread of prenatal testing that might lead to termination of pregnancy for fetuses with “abnormality”. Through interviews with multiple couples who participated in the prenatal test holding different perspectives and experts in the field of prenatal testing, the film attempts to provide a multi-faceted perspective on the burden comes with the knowledge of the fetus status to women and their spouse, raising an important question about the moral responsibility of pregnancy and the boundary of knowledge. Similarly, in the book “Testing Women, Testing the Fetus”, Rapp analyzed the social impacts and the cultural meaning of the advancement of prenatal testing technology by introducing communicative and practical problems posed by the technology from various perspectives (pregnant women and their families, experts in the prenatal testing fields, other parents of children with disability that could be diagnosed, etc). By providing and analyzing the complex implications of prenatal testing from various perspectives, Rapp illustrated a holistic view of the meaning of having this technology in a social context. Due to the amount of information provided in the book, I will pick out a few examples mentioned in the book and connect it to ideas in the film for the blog post. 

The decision-making process to terminate a fetus with a potential disability based on prenatal test results is highly complicated: it’s a combination of the pregnant women’s socioeconomic status, cultural/religious backgrounds, and ultimately theirs and their families’ worldviews. Socioeconomic status plays a critical role in this situation in which the upbringing of a Down’s Syndrome child would require more resources than a child without Down’s Syndrome. For example, in the film, one lady who decided to terminate her pregnancy because of the positive prenatal testing result for Down’s Syndrome reflected on her thought process of termination of her pregnancy: “if the child is very severe, how would my medical insurance cover…How much of it would they consider a life-time deal?…” Moreover, the cultural background the mother is from is another important factor influencing the decision from the very beginning of entering genetic counseling service to the final decision-making. The book mentions that the culturally constructed interpretation of the language used by genetic counselors when providing counseling might differ, which will influence the couple’s decision of whether to use prenatal testing in the first place (Rapp 84). The termination of pregnancy at a later stage can be culturally constructed: In rural China under the one-child policy, the commonly held view of valuing male offsprings more than female offsprings makes the gender of the baby a “defect,” thus making gender a reason for abortion. Another interesting facet of both the film and the book brought up is that the societal definition, perception, and the individual’s definition of disability have influenced the decision over whether abortion or not. The socially constructed definition of Down’s Syndrome leads to the stigma against Down’s Syndrome, which will heavily influence pregnancy termination. 

As both of the film and the book mention, prenatal testing puts pregnant women on the spot of a moral pioneer in which they are forced onto the position of a mother to decide what’s the best living condition for their children taking all facets into account. In the case of fetuses that are tested with a potential abnormality, the question is whether pregnant women decide whether the child is worth living, which raises a moral dilemma: does the mother have the right to terminate a pregnancy based on the results of prenatal testing and the advice of genetic counselors? How much agency should the mothers give to the genetic counselors and test results to make this decision? The book mentions that “Down’s child accounts for approximately only half of the positive test results,” meaning that the results might lead to false termination of a perfectly healthy baby. Moreover, the way many genetic counselors define Down syndrome children as having “menstrual retardation” blurs the variation within the Down’s syndrome children: some of Down’s syndrome children might only have mild retardation. The definition the genetic counselors use to explain Down’s syndrome can skew the couple’s decision towards the termination of the fetus (Rapp 90). 

Going back to the original moral dilemma: Should fetuses with “abnormality” be terminated? No one has a definitive answer to that. At the end of the day, it remains a highly personal choice for pregnant women and their families. The book elaborated on this elegantly: “the hegemony of the scientific model can never be absolute: the practical conceptions of heredity, maternal responsibility, and disability are also layered with many meanings other than those that the genetic counselors can describe.” (Rapp 78). However, a notion of discomfort, along with the decisions brought up in the film, is worth noting. As one of the genetic counselors featured in the movie said: “Every prenatal test and decisions should make us uncomfortable first.” Regardless of the final decision of whether to terminate abnormal pregnancy, one should always understand the burden of deciding a fetuses’ life, and the costs come with the knowledge of prenatal testing results. Such a burden of knowledge ought to make anyone uncomfortable. 

Last but not least, it’s worth bringing up a question that we don’t answer for: How much knowledge is to be considered a burden? Knowledge is a double-bladed knife that can do good and harm at the same time. In the case of prenatal testing, knowing the potential disability of a child puts the burden of deciding pregnancy status on women. Is it better to know the risks and make a decision early, or is it better not to know and face the potential of regretting later? I don’t have an answer for that. However, as an aspiring neuroscience researcher interested in the anthropological perspective of science, one of my main takeaways is the understanding of how multi-layered impacts of a single advancement in technology can bring to our society. Science does not exist in a vacuum: it is always necessary to consider the holistic picture of the changes a technology could bring to our society and keep in mind the ethical questions arising from it as our science gets more advanced. 

References:

Emory Libraries Resources Terms of Use – Emory University Libraries, docuseek2.com.proxy.library.emory.edu/cart/product/1407.

Rapp, Rayna. Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America. Routledge, 2000.

7 replies on “Prenatal Testing and the Multi-layered Dilemma”

Thank you Molina! The intersection of neuroscience and society will certainly be an active area for research and consideration of the anthropological perspective. While watching the film and reading the book, I sense that one could direct similar attention to many of the health sciences and be similarly emerged in a wide range of complexities. You point out really well, that the “interesting facet(s) of both the film and the book brought up is that the societal definition, perception, and the individual’s definition of disability have influenced the decision over whether abortion or not.” One could substitute “disease” for disability and “therapy” for abortion. As such, the language available for translating information into knowledge as the key. For many in the decision making roles, the language is foreign. Yet once formulated as actionable, as you noted as the final question, ” How much knowledge is to be considered a burden? Knowledge is a double-bladed knife that can do good and harm at the same time.” Laying out the spectrum of resultant decision-making algorithms from Downs Syndrome to gender selection as you have done reemphasizes the inherent “multilayered dilemma” of prenatal testing for all involved. In any scientific endeavor, whether observer, or observed, the conundrum of the pioneer is to acknowledge that one can not every really know how things will pan out.

Molina, while I was conscious of the One-Child policy in China, I was not aware that it had implicitly established being “female” as being disabled. This showed me just how trivial our definitions of disability can be and it really frames this discussion in a special way. I think a number of us would argue with fervor that being female isn’t a disability and that you shouldn’t terminate on the basis of gender. This is the same vigor you often see in parents with Downs- that a Downs child is not disabled and that you shouldn’t terminate the pregnancy. Framing it in terms of the China example just really put it into perspective for me just how individualistic these decisions are.

Great blogpost! It was really intellectually stimulating for me to read what you wrote; the summary and connections you made helped me in building on top of my own thoughts about the film and the book. It’s interesting to me that much of the narrative speaks of the increase in reproductive technology as providing increased choices for women, thus resulting in more complicated and difficult decisions. As you mentioned, this places women in spots as “moral pioneers.” Personally, I can’t help but feel that there is a tension between having freedom of choice, and an obligation (a lack of choice) to bear the burden of making difficult decisions. It’s an irony that increased freedom because of increased options tends to impose unavoidable burdens upon every women that is unfortunate enough to endure such potential complications of pregnancy.

I like how you also mention that science does not exist in a vacuum. We must recognize the complexity of each woman’s circumstances—including socioeconomic status, cultural/religious background, family history and worldview, among many other factors—in influencing her decision making process. In this regard, it also causes me to reflect on the limitation of choice that many women face. Differences in resources, particulary depending on variations in socioeconomic status, greatly impact a woman’s ability to make certain choices. This arises because of differences in family support, financial stability, and general knowledge about the scientific language used by genetic counselors in the field, to name a few.

Lastly, I was also pleased to see that we both took note of this quote: “the hegemony of the scientific model can never be absolute: the practical conceptions of heredity, maternal responsibility, and disability are also layered with many meanings other than those that the genetic counselors can describe.” I think it very aptly alludes to a philosophical or anthropological understanding of the complexities that arise when trying to assimilate new technological or scientific advances into human society. Science prides itself in accuracy, specificity, and a clear-cut nature: this can be seen in the detailed protocols that attempt to create mainstream procedures without room for variable interpretations. However, human behavior and human society are infinitely complex and cannot be adequately served only by the clear-cut nature of science. It is necessary to recognize the struggle of inevitable ambiguity in order to best understand the immensely complex and difficult decisions that women have to make regarding the very nature of their reproduction.

Hi Molina! I really like your take on this module’s reading and film. I think you did a really good job summarizing both of them, but then take it a few steps further in describing what they mean in order to understand it better. I specifically liked when you wrote that the burden of knowledge would make anyone uncomfortable. It think because of how much is riding on the decision of prenatal testing and the results, it makes sense that anyone and everyone would be nervous. I also think it’s incredible important to note which you touch on slightly at the end, that science but more specifically the decision for a woman or couple to terminate a pregnancy or to get prenatal testing done or to make any large decision, is something that should be look at holistically. In these decisions, there are so many different factors and roles that different things play into the decision itself that it is important to zoom out and look at the larger picture. I think that’s a really unique point that you bring up at the end of your post that’s something that I think everyone should think about when making decisions like these (and also in life in general).

Thank you for your post! I thought you did a great job of addressing the major points/themes of the pieces for Module 4, especially Rayna Rapp’s book. I’m glad you included the quote “the hegemony of the scientific model can never be absolute: the practical conceptions of heredity, maternal responsibility, and disability are also layered with many meanings other than those that the genetic counselors can describe.” (Rapp 78). I think this quote is very important because Rapp is acknowledging that human behavior and incredibly complex and, at least in the context of pregnancy and making a choice, difficult to predict. I believe Rapp purposefully didn’t answer the moral question of “should fetuses with “abnormality” be terminated?” as she recognizes that no one can universally decide that. Rapp did a great job of focusing on several factors that may influence one’s decision including cultural and religious backgrounds. In addition, Rapp went into great depth concerning socioeconomics and its effect on not only access to adequate healthcare knowledge but a woman’s choice to keep or terminate the pregnancy. She highlights that there is a lack of communication between those in support of genetic testing and the disabled community, a point you make when discussing the One-Child policy in China. Similar to Danya, this helped me apply Rapp’s thoughts on the varying and individualistic definitions of disability across different cultures in a real-world example.

Molina, this was a great blog post. Not only did you do an excellent job of summarizing the topics, but the way in which you drew connections between the two pieces synthesized the world of new reproductive technology in a way that was truly enlightening. Great! As the title of the film points out, ‘The Burden of Knowledge Moral Dilemmas in Prenatal Testing,’ prenatal testing, and testing in general, imports a burden of knowledge that may not be directly apparent at the outset. In our modern Biomedical world, we are constantly searching for more – more technology, more answers, and more knowledge. Yet, as both the film and Rayna Rapp point out, prenatal testing places an increasingly burdensome challenge upon new mothers. As “moral pioneers” mothers must decide whether or not to continue their pregnancies amid a myriad of conflicting concerns, many of which “the hegemony of the scientific model” fails to comprehend. “The practical conceptions of heredity, maternal responsibility, and disability are also layered with many meanings other than those that the genetic counselors can describe (Rapp 78). With new knowledge, comes the burden of choice, and here in lies the dilemma so many woman face while undergoing prenatal testing. No one can answer whether or not a fetus labeled as ‘abnormal’ should be terminated. That burden falls on the mother, and the mother alone.

Hi Molina,
Thanks for the excellent summary. A theme we’re seeing as we’ve completed the course is most sources acknowledge and point to the plurality and individualism required in making a moral determination when it comes to bioethics. We see this in Rapp’s reading, as illuminated by the quote you used, “the hegemony of the scientific model can never be absolute: the practical conceptions of heredity, maternal responsibility, and disability are also layered with many meanings other than those that the genetic counselors can describe.” What I found most notable when watching the film is the bravery of these women to discuss the difficult decisions they must make regarding their pregnancies for people like us to judge. Certainly we find that these decisions are contextually dependent and highly subject to the mother’s determination. Here’s hoping politicians listen to scholars like Rapp and enable women to make their own decisions regarding their futures and their bodies.

Leave a Reply

Your email address will not be published.