In the book Testing Women, Testing the Fetus: The Social Impact of Amniocentesis In America by Rayna Rapp and the film The Burden of Knowledge: Moral Dilemmas in PreNatal Testing by Wendy Conquest, Bob Drake, and Deni Elliott both attempt to break down the decision making process of how women use prenatal and diagnostic testing through real life experiences and how they are influenced by many factors such as sociological, historical, or religious factors and the anxiety this can cause.
Rayna Rapp broke down the chapters in her book beginning with the history of genetic experimentation to prenatal testing and diagnostic testing as more was and is being learned about genetics, and follows through with the beginning of a woman’s journey through the prenatal testing process. Throughout each chapter there is a continuation of the theme that there is not a specific answer for why people chose to make certain decisions, and emphasizes the complexity of the process. The film gives us a visual representation of the interviews taking place as a glimpse of the exact words used from the women through their personal processes. In this blog post I would like to highlight a few points made in both the film and the book that aligned and sparked my interest for further discussion.
To begin, through both of these interview processes it is clear how important communication is to the patient- professional relationship. Rapp in the chapter Communication of Risk writes about how language is key to know if a patient truly understands the purpose of prenatal and diagnostic testing. Rapp explains how through her interview she questions if the women truly understood what procedure they had done and what the results truly meant. She knew that women had different levels of education especially with a science background. This gap in communication was not only from the side of the patient but when Rapp interviewed genetic counselors that felt like they needed to be more trained in ethno-cultures of their patient demographic. The obvious is if you do not speak a language you cannot communicate, but it also calls into question how can someone communicate effectively if they do not know how to culturally phrase a question or continue a conversation to learn more about a patient if they do not know anything about that culture? There was the example from the book of a large patient demographic that spoke creole and little to none of the workers there spoke the language. Rapp gave the instance of a healthcare professional phrasing questions to certain people of different cultural backgrounds not knowing that it can be taken as an insult and easily offend the woman. At the same time how can a patient fully consent to something if they do not truly understand what is going to happen or the risks?
Furthermore, the exact manner in which a doctor or genetic counselor introduces the concept of prenatal testing or delivers the results is also a reflection of what is thought to be desired from the future mother. Offer value charged data in a value-neutral manner is supposed to be the role of doctors and genetic counseling when they offer prenatal testing and the results. In the film we saw how in reality it is not clear how neutral professionals can be specifically in how they present the information to these women,as they explained their doctors told them I have “terrible news or great news” when sharing diagnostic testing results. This leads to the stigma against women that chose to have kids with down syndrome. A women from the film after stating to a nurse that she might not get an abortion the nurse responded “How would you feel if you had down syndrome?” This clashing of views is shown in the film where the woman supporting a movement for people birth with different genetic disorders, felt that as these children grow up they should be more accepted in society.
Additionally, Rapp explores what she labels “the imaginary” to describe the what if thoughts as women go through the decision making process. The viewer saw this first hand in the film as women described what they would do if their fetus tested positive for down syndrome. This section of the film and book showed how important selective abortion is in these cases. These women who have already done the pre-natal testing as explained in the film are in a unique position as they have to think about having an abortion from a mother’s point of view. During this period it forced the women to confront any preconceived notions they may have about children with down syndrome or other birth abnormalities, while also contemplating if they would be able to be a mother to a child with birth abnormalities. The mothers from the film echoed some of the same concerns of the women Rapp interviewed in her book. Some women did not want to seem selfish, but they also did not believe that they would ever achieve a sense of normalcy after giving birth to a child with a genetic disorder, such as a woman that worked full time. On the other hand some women wanted to know the quality of life their future child might have living with a genetic disorder. These two reflections are not mutually exclusive as this can be seen in the African-American women from the film and read in brief interviews from different mothers. The African-American woman from the film felt like the books and films that she had seen only showed the “good” side of raising a child with down syndrome. She used the word glorified, explaining that she felt like they did show her the bad side. One quote from her that caught my attention was “there are enough prejudices in this world”. As an African- American woman I can assume that she was alluding to the struggles her son would have to face as a black man, and on top of that the struggles of a growing up with down syndrome. She was also the only woman to specifically bring up the financial aspects of raising a child with down syndrome in the film. She was unclear of the costs of raising a child with down syndrome and if she would be able to afford it. There was a woman from the book that was not able to get the prenatal testing done until her doctor labeled her a high risk before her insurance would cover the costs.
In the end, Rayna Rapp’s book and the Burden of Knowledge film demonstrates that the decisions and the moral dilemma being made is not an easy decision. Each woman expressed different reasons as to why they would do what they chose to do for prenatal testing. Decision making is not just only up to the mother or father, it can be influenced by family,close friends, and other life experiences. These factors all affect a person’s morals that are shaped by experiences. A person does not truly know how they might respond in a given situation until they face the same circumstances.