While a doctoral student at the University of Chicago Colin Halverson received a Dissertation Fieldwork Grant in 2014 to aid research on “Asymmetrical Meaning in Patient–Provider Interaction,” supervised by Dr. Michael Silverstein. In 2017 Dr. Halverson received an Engaged Anthropology Grant to aid engaged activities on “Clinical Pragmatics: Revisiting Communication Concerns in Medical Genetics”.
In my dissertation, I posed the question: How does one communicate complex information to people without the background to understand it? In order to find an answer, I conducted about 20 months of fieldwork (including 12 consecutive months in the year 2014) at an academic medical center in the American Midwest. Specifically, I worked with experts ‘translating’ information about patients’ genetic diseases to other specialists and to the lay patients themselves. I conducted interviews and participant observation in the clinic and its affiliated laboratories and completed two internships – one in medical ethics and one in patient education during my time in the field.
In this Engaged Anthropology project, I returned to my field site to discuss my findings with geneticists, genetic counselors, oncologists, educators, and laboratory scientists. I held a number of salons and one-on-one meetings with interested individuals from medical genetics, patient education, and medical ethics. These salons examined the topics that emerged from my research as the most ethically pressing in terms of communication in such a clinic: 1) the process of obtaining informed consent, 2) the disclosure of uncertainty in genetic test results, and 3) the unusual ethical position of medical genetics, located as it is between scientific research and clinical practice. I addressed each of these primary issues within its “thick” ethnographic context, providing clear and poignant case studies to illustrate the relatively more theoretical points I was discussing. Salons were held in the Center for Individualized Medicine and in the Office of Patient Education, but each was attended by a variety of people from across the hospital’s many departments that were touched by each day’s themes. This included participants from nursing, medical ethics, and laboratory science as well as people more directly involved in medical genetics and patient education. Between 20 and 30 people attended each session, including a number of people who Skyped in from the hospital’s other campuses.
In the first salon I held in the Center for Individualized Medicine, I brought up the topic of uncertainty (both in the return of results from genetic testing as well as in the process of informed consent). This proved so interesting to the attendees – and resonated so clearly with their personal concerns as professionals – that this more or less dominated both days of discussion with that group. Moreover, when I addressed this topic with the patient educators (toward the end of my time with them), this spurred particular enthusiasm and led to a number of discussions after the official sessions had closed.
With the patient educators, we primarily discussed insights into their work, insights that I derived from Mikhail Bakhtin’s notion of “double voicing” and Althusser’s concept of “interpellation.” I provided numerous real-life examples of these theories in action from my own time as an intern with them. They are very used to this sort of presentation, as it is more or less the same genre that their weekly Writers’ Meetings use: Attendees present a number examples of difficulties from their own work ‘simplifying’ “doctor talk” into “real English.” I took this format but also provided these theoretical frameworks in order to demonstrate some unifying issues underlying their professional practice.
These salons truly proved to be collaborative engagements between myself and the professionals at the hospital – many of whom I had worked with during my fieldwork, but some of whom I had not met before. They provoked critical thought and feedback, and both the attendees and I felt that we left the salons better informed and better positioned to make positive interventions into clinical care. While discussing the three primary forms of “non-knowledge” that I hypothesize are at play in medical genetics (risk, uncertainty, and randomness – which I furthermore proposed are conflated by patients), I got remarkably discerning feedback. While everyone agreed that the distinctions I was making were valid and of clinical significance, one laboratory scientist said that within my framework she saw uncertainty as a subset of risk rather than a stand-alone category. This sparked a long debate about whether uncertainty (as I described it, “knowledge about the limits of one’s knowledge”) was medically actionable and therefore could constitute “real risk.” Likewise, a clinician encouraged a reflective (and anthropological!) discussion when he asked the room for a “definition of knowledge” before anyone continue our current discussion on uncertainty.
Attendees of the salons engaged enthusiastically with my work, asked and answered questions that have arisen from it, and related these topics back to the ongoing local and global transformations currently taking place in their professional worlds. Both groups have requested that I return again to continue the conversations we started in our salons. I received a number of grateful and kind emails, describing how our discussions have led them to reflect on their practices, in particular appreciating the links I drew to ethics, which is a critical domain that typically remains outside of non-clinicians’ conceptions of their professional labors. One person even told me she thought one of the salons was “the best professional development presentation we have had in a while!”
This was a wonderful opportunity for me to re-engage with my old colleagues and friends and to see how the clinic has evolved since my last visit in 2015. These discussions have added to the ways I have been thinking about the clinic and its practices of ‘translation’ as well. In fact, the article I have begun on the three forms of “non-knowledge” in medical genetics will greatly benefit from some of my interlocutors’ recent insights. I very much appreciate Wenner Gren’s continued support of my work, as do the attendees of my salons.