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Sara L. Ackerman
University of California, San Francisco
http://orcid.org/0000-0003-3567-7698
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Katherine Weatherford Darling
University of California, San Francisco
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Sandra Soo-Jin Lee
Stanford University, Center for Biomedical Ethics
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Robert A. Hiatt
University of California, San Francisco
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Janet K. Shim
University of California, San Francisco
Keywords:
post-genomic science, gene-environment interactions, translational research, ethics
Abstract
Biomedical research is increasingly informed by expectations of “translation,” which call for the production of scientific knowledge that can be used to create services and products that improve health outcomes. In this paper, we ask how translation, in particular the idea of social responsibility, is understood and enacted in the post-genomic life sciences. Drawing on theories examining what constitutes “good science,” and interviews with 35 investigators who study the role of gene-environment interactions in the etiology of cancer, diabetes, and cardiovascular disease, we describe the dynamic and unsettled ethics of translational science through which the expected social value of scientific knowledge about complex disease causation is negotiated. To describe how this ethics is formed, we first discuss the politics of knowledge production in interdisciplinary research collectives. Researchers described a commitment to working across disciplines to examine a wide range of possible causes of disease, but they also pointed to persistent disciplinary and ontological divisions that rest on the dominance of molecular conceptions of disease risk. The privileging of molecular-level causation shapes and constrains the kinds of knowledge that can be created about gene-environment interactions. We then turn to scientists’ ideas about how this knowledge should be used, including personalized prevention strategies, targeted therapeutics, and public policy interventions. Consensus about the relative value of these anticipated translations was elusive, and many scientists agreed that gene-environment interaction research is part of a shift in biomedical research away from considering important social, economic, political and historical causes of disease and disease disparities. We conclude by urging more explicit engagement with questions about the ethics of translational science in the post-genomic life sciences. This would include a consideration of who will benefit from emerging scientific knowledge, how benefits will accrue, and the ways in which normative assumptions about the public good come to be embedded in scientific objects and procedures.
Author Biographies
Sara L. Ackerman, University of California, San Francisco
Sara L. Ackerman is a medical anthropologist and assistant professor in the Department of Social and Behavioral Sciences at the University of California, San Francisco. Her research interests include the sociocultural and ethical implications of emerging biomedical technologies. She is currently studying the use of genome sequencing for patients with advanced cancer and the production of uncertainty in “precision medicine.”
Katherine Weatherford Darling, University of California, San Francisco
Katherine Weatherford Darling is Assistant Director of Research and Academic Programs at the Science and Justice Research Center and Adjunct Assistant Professor of Sociology at the University of California, Santa Cruz. Dr. Weatherford Darling’s current book project traces how and why HIV became a chronic illness and remains an ongoing crisis in the US. Her collaborative research traces visions of health, risk, and care in California’s emerging “biohub.”
Sandra Soo-Jin Lee, Stanford University, Center for Biomedical Ethics
Sandra Soo-Jin Lee is a medical anthropologist and senior research scholar at the Stanford Center for Biomedical Ethics, and teaches in the Program in Science, Technology and Society at Stanford University. Her research interests are in the sociocultural and ethical dimensions of emerging genomic technologies and their translation into biomedical practice. Dr. Lee leads studies on the governance and use of biospecimens and data in research and the ethics of identifying race, ethnicity and ancestry in studies of human genetic variation.
Robert A. Hiatt, University of California, San Francisco
Robert A. Hiatt is professor and chair of the Department of Epidemiology and Biostatistics, University of California, San Francisco, and associate director for Population Science of the UCSF Helen Diller Family Comprehensive Cancer Center. His research interests include cancer epidemiology, health services and outcomes research, and the social determinants of cancer.
Janet K. Shim, University of California, San Francisco
Janet K. Shim is professor of sociology in the Department of Social and Behavioral Sciences, University of California, San Francisco. Her current research focuses on analyzing the science of health disparities and the production of health care inequalities. She is the author of Heart-Sick: The Politics of Risk, Inequality, and Heart Disease (2014, NYU Press).
Section
Research Articles
