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Oral Presentation Session
Reviewed by: Society for Medical Anthropology
Of interest to: Practicing and Applied Anthropologists, Students
Primary Theme: Health
Secondary Theme: Inclusivity
Recent technological developments enable rapid sequencing of human DNA, providing the long-sought “pay off” of scientific investment in sequencing the full human genome almost two decades ago. Sequencing services are offered “in house” by academic medical centers and by commercial labs. Massive funding from the National Institutes of Health promotes the translation of sequencing into clinical and public health practice. This transformation implicates patients, their families, and health care professionals in a complex project to build genomic medicine from the ground up. Research funders appear to be promoters as well as evaluators of clinical “utility.”
This session will present a range of “embedded” anthropological projects, studies taking place in clinical and research settings at an academic health science center. The work tracks the challenges genomic medicine must traverse on the (hopeful) road to becoming “standard” of care. We reveal that genomic medicine, sometimes called “precision medicine,” provides probabilities rather than certainties, addresses futures rather than presents, and offers findings so complex and uncertain that even experts fail to fully grasp their meanings. Multiple stakeholders are party to this endeavor. Patients, families, and members of the general public are being asked to “consent” to participate in studies that blur the boundaries between hypothesis-testing experimental work and clinical care. Not only are they being tasked with assimilating technical information in a highly stressful context, such as caring for a child with a serious illness or making decisions about cancer screening or therapies, but they are being asked to make difficult choices about their lives and the lives of family members. These interactions happen within a regulatory regime that focuses attention on individual choice and control. It is patient-participants who are ultimately charged not just with the opportunity to enroll in studies or select clinical services based on sequencing, but with the responsibility of making the best choice for themselves, for their families and for the greater good.
Using a variety of anthropologically-driven insights and ethnographic methods, the papers discuss how lay persons enter and maneuver within this liminal space. These ethnographic accounts also seek to explore how these hybrid clinical-experimental studies are coming to shape the direction of healthcare itself. Of particular concern is the question of health inequalities: will the ever-widening array of tests provided by genomic medicine ultimately mitigate or exacerbate health disparities? The papers reveal that the potential benefits of precision medicine may only be afforded to those best able to understand the findings of such studies and who have the social and cultural capital to act upon them. There is an important role for ethnography in examining how families with low socioeconomic means and low health literacy come to enter into what are quasi-experimental arenas, albeit ones which hold the promise of future clinical benefit. Ultimately the concern is that those traditionally disadvantaged will not have the tools needed to take on the patient-participant role. However, how true is this concern—can we explore more deeply?
Barbara Koenig
Professor/Director of UCSF Bioethics
University of California, San Francisco
Barbara Koenig
Professor/Director of UCSF Bioethics
University of California, San Francisco
Sara Ackerman
University of California San Francisco
Sara Ackerman
University of California San Francisco
Simon Outram
Research Specialist
UCSF
Simon Outram
Research Specialist
UCSF
Galen Joseph
Associate Professor
University of California, San Francisco
Rayna Rapp
Professor
New York University
Katherine Darling
Stanford University
Jenny Reardon
University of California, Santa Cruz