Genet Med. 2014 Jun 19. doi: 10.1038/gim.2014.74. [Epub ahead of print]

The translational potential of research on the ethical, legal, and social implications of genomics.

Burke W1, Appelbaum P2, Dame L3, Marshall P4, Press N5, Pyeritz R6, Sharp R7, Juengst E8.

Author information

• 1University of Washington, Seattle, Washington, USA.
• 2Columbia University, New York, New York, USA.
• 3Duke University, Durham, North Carolina, USA.
• 4Case Western Reserve University, Cleveland, Ohio, USA.
• 5Oregon Health & Science University, Portland, Oregon, USA.
• 6Departments of Medicine and Genetics, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
• 7Biomedical Ethics Program, Mayo Clinic, Mayo Medical School, Rochester, Minnesota, USA.
• 8University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.

Abstract

Federally funded research on the ethical, legal, and social implications (ELSI) of genomics includes a programmatic charge to consider policy-relevant questions and to communicate findings in venues that help inform the policy-making process. In addressing this goal, investigators must consider the range of policies that are relevant to human genetics; how foundational research in bioethics, law, and the social sciences might inform those policies; and the potential professional issues that this translational imperative raises for ELSI investigators. We review these questions in light of experiences from a consortium of federally funded Centers of Excellence in ELSI Research, and offer a set of policy recommendations for program design and evaluation of ELSI research. We conclude that it would be a mistake to require that ELSI research programs demonstrate a direct impact on science or health policy; however, ELSI researchers can take steps to increase the relevance of their work to policy makers. Similarly, funders of ELSI research who are concerned with facilitating policy development can help by building cross-disciplinary translational research capacities, and universities can take steps to make policy-relevant research more rewarding for scholars in the humanities, social sciences, and law.