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Humanistic Medicine and the Ethics of Prenatal Genetic Testing: A Q&A with Dr. Ruth Farrell

June 28, 2017 • By Ruth Farrell Humanistic Medicine and the Ethics of Prenatal Genetic Testing: A Q&A with Dr. Ruth Farrell

What is the subject of your research for The Enhancing Life Project? 

My research is focused on prenatal genetic technologies. We are living in an incredible time when advances in science and medical technology can transform the lives of patients and their families. Specific to my work, the advances taking place in prenatal genetics are beneficial-they are a good thing. They provide expectant parents with information about the health of the fetus from which to make formative decisions about the pregnancy and future reproductive healthcare. Such information can have salient consequences for the pregnancy, the pregnant women, and her family. At the same time, these technologies introduce new and complex challenges to the counseling and decision-making process. Thus, it's absolutely critical that patients should be able to access them in a way that's informed and that reflects their values and beliefs—as individuals, parents, and family members. How can we best bring new technologies from the bench to the bedside? Much of my work has been focused on informed consent: How can we be certain that patients get the information that they need, but also how can we be certain that the decision-making process—which includes thinking about values and preferences, many times based on religion and spirituality—also gets its due attention? 

Is there anything recently in news or public discourse that has struck you as relevant to your topic?

The thing I find concerning in the public discourse is this onslaught of proposed or passed legislation or policy that is impinging upon women's access to healthcare. Part of the concern is the barriers that they pose to women seeking healthcare, either before pregnancy or once pregnant. Entering the healthcare system is not the end of the story. We are seeing more and more, once women are in the healthcare system, their access can be restricted and limited considerably—not only in terms of what tests and resources  can be accessed, but also in terms of healthcare choices which can be made in response to the information once a woman has it.  

For example, my colleagues and I recently described this emerging situation in a paper titled “The Impact of the 20-week Abortion Ban on the Delivery of Prenatal Care.” A main point of this paper is that, while there are an increasing number of opportunities for expectant parents to learn about the genetic make-up of the fetus, the options available to them if a serious fetal genetic condition is identified are becoming increasingly restricted. Imagine an expectant woman whose doctor recommends the use of one of these new tests and she makes the decision to go ahead with the test. In the process, she then learns of a very serious fetal genetic condition. The decision about continuing or ending the pregnancy should be a personal one,  made in a way that is informed by facts about the condition and one’s values and beliefs about pregnancy, quality of life, disability, abortion, and family. As a result of increasingly restrictive laws, in a situation where expectant parents should have the time and resources to make such a decision, they are instead faced with a truncated and pressured timeline to make some of the most profound and formative decisions. 

On a micro level, looking at informed consent decision-making, there are important tasks that we need to address as the technology moves forward. But on a macro level, looking at what's going on nationally and globally with women's health, there are even more serious issues to face that must also be addressed with evidence-based data from high-quality research.  

In what way does the structure of healthcare inform physician-patient relationships? 

Medicine is a different field than it once was. I grew up in a family of physicians—my mother and father were physicians as were my grandmother, grandfather, great uncle, aunt, and uncle. Through their stories, I had the chance to see how the practice of medicine has changed over time.  Things are very different now. These days, you have to see more patients, and there's more you've got to talk about, and there's more documentation, and there's less time. It can become a very impersonal process wherein you're looking more at the computer than at the patient. There’s a growing recognition of the importance of patient-centered care and ensuring care meets the needs of our patients. At the same time, we also have to think about the healthcare provider. If the providers don't care for themselves, then they can't care for patients. So I think that it is more important than ever to find touchstones back to why we all went into this field, why we chose to serve the health of our patients. There may be a role for Enhancing Life Studies in that as well: to reflect on the lives of your patients, but also on your life as a healthcare provider. 

Is there a connection with The Enhancing Life Project and the contemporary delivery of healthcare? 

Couching medical information within someone's values and beliefs—or at least helping them walk that path—when welcomed by the patient, can be a way to approach patient-centered care. These days, we talk about patient-centered care: being certain that medical decisions align with the patients’ needs, goals, and preferences. And we talk about shared decision-making: a process of exchange between the patient and physician in terms of material information, values, and opinions. We try to see patients as whole individuals—not just a condition, or a disease, or a medical problem. By broadening our perspective in the spirit of patient-centered care, openness to discussions of values and beliefs, whether those be based in religion and spirituality or other foundational personal belief systems, may be a helpful tool to some people who are figuring out what reproductive healthcare decisions to make. 

What are ways that a cross-disciplinary approach to the issues you see in patient care and research, of both scientific and ethical relevance, has been helpful as a framework? 

The way these questions about the use of technology are addressed—What genetic conditions do we test for? How do we decide what conditions are significant enough to be tested for? What action-ability is there with the information gathered from testing?—these questions are profound, and important, and broad, and can't be answered by any one discipline.

That is the beauty of The Enhancing Life Project. Many of the scholarsare theologians, philosophers, or social scientists. I would have never thought I'd be collaborating with this diverse cohort of colleagues. Yet, their insight is critical to understanding the deep and profound issues that advances in genetic science and reproductive medicine raise.  If I hadn't worked with theologians to gain a deeper understanding of the concepts of values and belief and the roles of religion and spirituality in people's everyday lives, I wouldn't be able to open up that corridor of research. Because of the complexity and nature of discussions about the beginnings of life and reproduction, you need multidisciplinary approaches because otherwise you won't see the blind spots that will stop your research in its tracks.

What are some of these major blind spots? 

One is that we don't look at the bigger picture in terms of, say, disability. Some of my colleagues in The Enhancing Life Project are looking at the questions of: How do we define ability and disability, and how are individuals with disability or differences accepted or not accepted into our society? As we start to expand testing panels, which are now able to look for a host of different genetic conditions—some which are severe childhood-onset, and some of which are less-severe, or for which there are more social resources to support individuals with these conditions—we need people to help us think about a series of critical questions: What is the impact of these technological advances on communities who have differences, who have lived with varying degrees of ability? What is the impact on individuals, and what's the greater impact for society in accepting difference and different-ableness? It is also about how advances in science and biomedical technology shape our concepts of health and illness. There are also larger questions about changes in society and the climate which affect the world in which we live, the world which will make it more or less possible for individuals and families to thrive. That's just one example of drawing from researchers who think about these questions in different disciplines. 

What do you think of the role of Enhancing Life Studies in medical education? 

Ethics and medical humanities are vital aspects of medical education. Amidst the volume of medical information students must acquire during their education, ethics and humanities remain as a touchstone to our human side, the side we can dismiss to work through the long hours and difficult situations we see in the compassionate care of patients. I think Enhancing Life Studies is an important new complement to efforts to restore human touch to patient care.  

Have you been able to get a sense of whether or not it's been illuminating for students to think about medical science from a more humanistic perspective? 

 It's still a pretty foreign concept to say there may be a role for religion and spirituality in the context of reproductive medicine that's not prohibitory—usually with religion and spirituality in reproductive medicine, it's "you shouldn’t do this” or “here are the consequences if you do that." But I'm trying to turn that on its head a little bit and highlight the idea that religion and spirituality can help women navigate the vast uncertainty that can comes with prenatal genetic testing. In isolation, these ideas are hard to present to the medical community. When we think about religion and spirituality in end-of-life decision-making we find it helpful—so if we embed it in that context, we can find it helpful in the reproductive context as well. 

This is coming from a complete "medical layperson" point of view: what might a medical course look like that incorporates Enhancing Life Studies? 

It’s not about standing up in a lecture hall. It's more a format where students can experience patient care, can begin to ask those questions themselves, and can recognize that there's a field out there to help. It’s about students having a narrative inquiry: thinking and reflecting on a case, thinking about the ethics, thinking about the difficulties that were experienced, and thinking about how seeing the broader picture of a patient could help navigate that. But medical education is also about caring for the physicians and healthcare providers who confront moral distress when dealing with very complicated technologies—we have all these technologies, but what do we do with them? Are they truly enhancing life? Enhancing Life Studies, in the context of medical education, can help to care for patients, and also to care for the care providers. 

That seems like a fascinating way to approach pedagogy!

They told me this on my first day of med school: med school is like drinking from a fire hose. You come in and there's so much information that you have to learn, and there are so many physical and emotional experiences, between seeing life, seeing birth and death, seeing joy and sorrow, seeing pain and comfort. It can be incredibly overwhelming. In that context, when you're seeing the end of life, and the beginning of life, and suffering, and alleviation of suffering, you’ve got to pause and say, "How can I be a humanistic physician? How can I best care for patients?" These moments should be an opportunity to reflect on what medicine is, and what the goals of medicine are, and who patients are, and who we are as physicians. Enhancing Life Studies may have a benefit for these reflective moments of piecing it all together. 

Looking back, what was the most important aspect of The Enhancing Life Project

It's been a real pleasure to work with The Enhancing Life Project principal investigators, Bill Schweiker and Günter Thomas, and also the other scholars. They've all made me stretch the way I think—which has been uncomfortable in some senses, as tends to be the case whenever you come out of your comfort zone. 

I've been coming out of my comfort zone both personally and also professionally, because we don't talk about religion and spirituality in reproduction. My colleagues in the ELP challenge me to go beyond, and when I take that step, they still support me—whether what I'm saying is on the mark, or a little off the mark. I was really appreciate that, because in order to take risks, to break new ground, you have to be in a supportive community who will challenge you and then be honest with you about how you need to retool or reframe your ideas after you take those first exploratory steps. And so I really do want to get the message across that this is a new field for reproductive medicine, but I couldn't have done it without both the disciplinary perspectives and also the support and guidance of the other ELP scholars.