Pre-Natal Testing and the Moral Dilemma

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.

7 replies on “Pre-Natal Testing and the Moral Dilemma”

Ebony, I really enjoyed your post. I think you hit on some of the major aspects of both the film and novel from this module. Without a doubt, we have seen that pre-natal testing can bring up a lot of really tough decisions. Like you talked about, the people around the couple/woman can help shape how she feels and thinks about everything that she needs to decide on. I also think it’s important to note also that a lot of what influences someone’s decisions and behavior is our life experiences, something that plays a part in everyone’s lives whether they realize it or not. Like you said, there are so many factors that can contribute to these decisions and are worth thinking about when studying the topic.

Ebony- I really appreciate how in-depth your analysis was, especially concerning communication within the patient-professional domain as described in Rapp’s work. It’s important to note that several factors influence views on genetic testing including religion, socioeconomic status, education, and environment. Due to the difference in diversity not only of patients but of their beliefs, genetic counselors carry great influence, as you mentioned, in explaining the concept of prenatal testing to patients. Rapp mentions that the counselors take on this responsibility by translating, simplifying, and/or clarifying information. I’m glad you included the importance of language in your analysis as well. In clinical settings, Rapp argues that doctors/counselors must carry a certain medical etiquette in their efforts to communicate with patients, especially those from different cultural and/or geographical backgrounds.
Without attempting to understand a patient’s background, there are great opportunities for misinterpretation and even offense, as you described with your example from Rapp’s book about a large demographic of people who speak French and Haitian Creole and it’s lack of representation/understanding within healthcare systems.

Ebony, this is a really good overview of the material. One part that particularly stood out to me in Rapp’s reading was the miscommunication that occurred because of the Creole language barrier. It reminds me of the time I worked at a clinic and one of the patients who came in was an expecting mother who only spoke Spanish- she was hysterical and scared she was miscarrying. It took another volunteer having to drive out and translate so this mother could get the proper medical care ie. the doctors could understand fully what was going on and send her to the ER if the blood she was seeing was truly alarming (versus common spotting). These two examples really depict just how essential language is to understanding properly what is occurring medically. “Spotting” in spanish versus “bleeding” offer two very different feelings and interactions between patient and doctor. Similarly, in the case Rapp explains “retarded” was a common word this Haitian father would hear as opposed to a medical disability- “but when we put them in the Haitian academy, they do just fine”(82). His understanding of the word led to him to be offended and he took further action as to not wanting an amniocentesis for his wife. To answer your 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” I truly think a physician can not do this fully and properly if they are not from that culture. That’s why I think it is so essential to diversify the field so that people from different backgrounds have a chance of getting proper medical care.

Hi Ebony,

I really liked what you mentioned about the importance yet difficulty in having “value-neutral” conversations between the doctors and their patients. This is so, so important in helping patients to best make their own informed decisions regarding the usage of reproductive technology. As you also mentioned, however, it can be extremely difficult for doctors to feel that they comfortably understand the cultural backgrounds of their patients in order to perform adequate care. Differences in language–not just in terms of the languages of the world, but also regional variations due to cultural and educational differences–result in very significant implications. Both Rapp and Bhattacharya’s books mention how doctors performing in the medical field need to understand the nuances of their patients’ religious and cultural beliefs; however, their training in academia is often insufficient in training them in terms of cultural literacy. In this regard, change also has to be implemented on the level of education, in the way that we prioritize the holistic development of medical professionals.

Great post, Ebony! I think you did a great job of discussing communication within the patient-professional sphere, as well as discussing some of the key aspects from both the book and film. As we have seen in the readings throughout the session, the decisions a woman faces in the wake of pre-natal testing are exceedingly complex. This burden is shaped by a confluence of individual factors – whether that be religion, socioeconomics, politics, culture, or, as you noted, social environment. Specifically, patient-professional environments in the medical setting have the power to shape decisions especially with regard to new reproductive technologies. Communication in the patient-professional domain is a key factor in the delivery of culturally competent care. Biomedicine is typically conceived of as a “culture of no culture,” yet, it, itself, has a culture of its own. For there to be true communication in the patient-professional relationship there needs to be an understanding of both the culture of biomedicine as well as the various contexts in which patients interpret biomedicine.

Hi Ebony,
Thanks for the awesome post! You bring up a really excellent point in talking about the necessity of doctors to have the cultural literacy necessary to communicate with people of diverse backgrounds about their options for pre-natal testing. I think this is relevant to Danya’s discussion of the movie and the importance of redefining the social landscape around ableism in society.

Your post really hit home with me Ebony! When I was in my cardiology training in 1985, fetal cardiac ultrasound was just beginning. The capacity to see congenital heart disease was indeed a blessing and a burden. Although I would go on to complete my fellowship in adult cardiology, I maintained an expertise in imaging congenital heart patients who had grown up into adulthood. You’ve done a beautiful job summarizing what is an enormously important area of study, regardless of whether one is the observed, the observer, the audience or the student. Thanks!

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