Lessons from the Enhancing Life Project: Why I marched; why I write

Image: Dr. Farrell holds up another marcher's sign for them so they could photograph the crowd--without realizing the marcher took a picture of her, too!

January 21, 2017 was not your typical Saturday in Washington D.C.—approximately 500,000 people came from across the U.S to stand together for the Women’s March on the Mall in D.C. At the core of the march were deep concerns about the health and well-being of women. Yet this was not the only issue: a host of other critically important issues were represented, centered around a theme of ensuring the ethical and just treatment of people both at home and abroad. I had the privilege to stand side by side with thousands of people in support of these causes. Although we came from different backgrounds, belief systems, and experiences, we were united in one goal: to be certain our voices and the voices of those who could not be there were heard. 

I had never done anything like this before. I have my opinions about politics and government—something that would be hard to avoid working in the field of reproductive medicine and women’s health. Once in a while I will get into a heated discussion with friends or family members about reproductive health laws and policy. But, until now, I have never participated in a march. This time, however, I felt like I needed to do something more than talk among my peers or Tweet about my concerns. So as soon as I heard about the Women’s March planned for January, I knew I would take part. Like many, I put my life at home on hold and drove overnight to be part of this historic event. 

As an obstetrician-gynecologist, it is my mission to help women live healthy and empowered lives. Every day, I work through Gordian knots in the delivery of reproductive healthcare: decisions tangled with patient needs, ethics, regulations, costs, and available medical technology, decisions that have a lasting impact on women, their families, and their communities. 

As a researcher, I am aware that the data that should inform the delivery of women’s health often does not make it into the national policies that ultimately affect patient care. The result is that multiple barriers exist to women’s access to evidence-based and patient-centered reproductive healthcare. While these days it seems like most of these barriers are extremely overt, they are also oftentimes subtler and more insidious, compromising women’s access to healthcare without garnering much attention. 

My work as a researcher is focused on ensuring that women have the information and support they need to make informed decisions about their reproductive healthcare, particularly when making a decision about whether to use a new prenatal genetic test and what to do with the results of that test. Based on my research and the research of others, women have faced and continue to face, barriers to learning about the different fetal genetic conditions that can be identified during pregnancy, and about the tests available to identify the risk of such conditions. These barriers are not only a result of the increasing complexity of this information, but also of the limited timeframe which women have to  make decisions, in light of the ever-changing gestational age clock. Yet, as part of my research for The Enhancing Life Project, I learned that the challenges that women face run even deeper. 

Decisions about the use of prenatal genetic screens and diagnostic tests involve more than simply considering the material facts about genetic conditions and how to identify them. These decisions also involve considering how the advantages, disadvantages, and risks associated with that information resonate with one’s personal and private values about pregnancy, disability, pregnancy termination, and family. These values often have their origins in one’s religious and spiritual beliefs and practices. It is not uncommon for patients and healthcare providers to discuss religion and spirituality at the end of life or in critical care situations, as these topics often help define choices about healthcare in the final days and hours of life. What my research shows, however, is that reflection on these fundamental beliefs can also frame prenatal care decisions, particularly when these decisions are entrenched in unprecedented levels of uncertainty surrounding tests that produce a volume of complicated genetic information about the fetus and, in some cases, the notion or reality of pregnancy loss. Even so, concepts related to religion and spirituality are some of the most difficult and potentially controversial topics to discuss in the delivery of reproductive medicine. 

I gained a greater appreciation of the role and nuanced complexity of values in the decision-making process as part of The Enhancing Life Project. Pregnant women report hesitance to raise issues related to their values and beliefs at the beginning of the fetal genetic risk assessment process. However, once the presence or the increased risk of a fetal genetic condition is identified, values and beliefs appear to play a more important role in the decision-making process. Yet, pregnant patients seem unsure of how to broach these topics in the medical environment with their healthcare provider and, as observed as part of prior studies, these are topics with which physicians have little training or comfort in discussing in the clinical setting. 

While this may seem like an insurmountable problem to solve, it is critical to address. The ability to consider medical options in the context of a patient’s values and beliefs is at the heart of patient-centered care. Moreover, the imminent availability of whole fetal exome sequencing will further complicate the decisions faced by pregnant women when considering the pregnancy, their family, and their own health. This problem, compounded by preexisting barriers that stem from current healthcare practices and from impending restrictions on women’s healthcare choices, is deeply disturbing to me. It is my hope that the work conducted as part of The Enhancing Life Project and the collaborative conversations I have had with theologians, philosophers, social scientists, and physicians from other disciplines will raise awareness of this gap in our scientific understanding about decision-making.  

The Enhancing Life Project has provided more than a glimpse into the challenges that new genetic and genomic technology bring to patient care. It also has taught me that scholarly work cannot remain in a vacuum. It needs to be disseminated into the public discourse, much further than just the usual academic and scientific communities to which we are accustomed. As so eloquently said by ELP Interlocutor Piet Naude, “…we are called not simply to theorize by ourselves and to write books that are read by a very close circle of insiders who understand the technical language. We have a task in broader society.” That idea and the collaborative dialogue with leaders across disciplines and national borders has forever affected me. I have come to see my actions change as a result. It is not enough to have debates in the comfort of my own academic environment. For me, it is more important than ever to continue to write about women’s health and to share that work so that the voices of my patients and their families can be heard.