Lindsay Guyette: Module 4

Testing Women, Testing the Fetus

In this book, Rayna Rapp explores the many factors that come into play when a woman chooses to terminate a wanted pregnancy, inspired by her own experience in having an abortion to terminate a Down syndrome fetus. This report comes in the form of her own notes and quotes from interviewing a diverse group of women being treated by the Prenatal Diagnosis Laboratory of New York City. The women came from many walks of life, with notable differences in care cropping up between working class and middle-class women, minority and non-minority women, and American women versus immigrant women. Most of these women were scheduled to receive amniocentesis, which is a test often administered to pregnant women over the age of 35 that is used to identify genetic disorders in fetuses.  This is commonly used to test whether the fetus has Down syndrome or another chromosomal abnormality.

When met with a positive diagnosis, women may be given the option to terminate the pregnancy. In fact, this ‘option’ is often shaped by the personal views of the clinician providing care. Some women may have to fight and change facilities to be given access to abortion services, while others find themselves nearly asking for permission NOT to have an abortion. This brings up the issue of how medical information is not distributed equally across different populations. A common theme in Rapp’s report is the issue of mathematical and scientific literacy, which is both presumed by the clinician and used to alter the medical information that is distributed to the patient. There are many problems with this setup. Namely,

1. Patients who are unfamiliar with genetics, statistics, and prenatal disorders are at a disadvantage to be able to make an informed decision about their pregnancy.
2. Patients who are members of a minority group and/or are working class are often presumed to have low medical literacy, limiting the knowledge being offered to them at all.
3. Patients who do not speak English as a native language are at risk of being given medical information by interpreters who do not fluently or even accurately translate for medical personnel. This is, naturally, an impediment to learning about a topic as complicated as genetic testing.

Admittedly, I had previously only thought about basic physical access to prenatal care and abortion services. Even if these services became more geographically accessible, the biases of the clinicians can impact the quality and nature of the information that is given to pregnant women looking for genetic testing or abortions. This adds another layer of nuance regarding the ethicality of aborting fetuses with genetic abnormalities, given that information about these disorders is shared dynamically.

Another interesting issue is the multi-layered stigma with which we view abortion and pregnancy as a whole. The amount of responsibility attributed to a woman for carrying out pregnancy and ‘making’ a healthy baby is beyond what can reasonably be expected. This pops up in a number of different ways.

1. Many women felt that they did not need to receive fetal testing because they themselves were healthy. When babies were born with genetic or physical abnormalities, it was seen as evidence that the mother engaged in some kind of ‘bad’ activity while pregnant.
2. The distinction between ‘good’ and ‘bad’ abortions. Getting an abortion because of young age or financial instability was considered irresponsible or selfish by several women who were receiving abortions for a wanted pregnancy. The latter group tended to identify as getting ‘good’ abortions, chosen due to a high risk of mental or physical disorders.
   1. This community who received ‘good’ abortions felt ostracized by others who lost wanted pregnancies, due to their role in choosing to terminate.

We discussed in class how abortion is often presented as a debate between religion and secularism, even if it exists at the heart of a more complicated web than that. As noted in the book, a significant number of women who received abortions identified as religious, but depended just as much on the input of local, familial, and personal religious authority when formulating their views on abortions.  A woman’s choice could not be determined by religious background but was more easily influenced by her own views and pregnancy history. It’s just as the following concept was interpreted in two different ways:

• When God provides problems, he also provides solutions.

By this, one could envision genetic abnormalities as a problem and abortion as a solution, or by providing the strength to raise a disabled child. Again, the meaning of our knowledge and support systems are dependent upon our background and on those around us.

The Burden of Knowledge

This video is very effective in using anecdotal accounts to illustrate the reality of wanted pregnancies with unexpected genetic outcomes. I believe that this movie tries in good faith to present both ‘sides’ of the abortion debate. The experiences of each woman are very genuinely expressed, in which women either reported terminating a wanted pregnancy due to a positive diagnosis of a genetic disorder, or women who reported carrying a pregnancy to term despite the diagnosis of a genetic disorder.

In a way, it seemed like this movie served to present the complex circumstances of abortion described by Rapp in a more digestible format. That is, someone who finds reading literature to be a barrier to understanding issues in depth may prefer a movie that presents a more consistent visual narrative.

My Thoughts

I personally enjoyed the reading and movie for this module. I especially feel that Testing Women, Testing the Fetus, is such a good book that I’m surprised it hasn’t been a reading for another one of my classes yet. For me, abortion has primarily existed in a bubble that only had to do with unwanted pregnancies. I had heard of terminating wanted pregnancies, but I had never engaged with so much content explicitly grappling with the issue.

It’s unlikely that I would have to consider terminating a wanted pregnancy for several more years at least. If I found out I was pregnant today, I’d be coordinating an appointment with the nearest clinic providing abortion services. I’m lucky to exist in circumstances that would enable this, as the nearest clinic is 300 miles from my home. This module has given me the opportunity to consider the very diverse group of women who are met with positive genetic results and must, either implicitly or explicitly, decide whether or not they will make the already difficult decision to abort their wanted pregnancy.