The Ethics of Translational Science: Imagining Public Benefit in Gene-Environment Interaction Research

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.