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.