Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide

Susan M Wolf; Wylie Burke; Barbara A Koenig

doi:10.1111/jlme.12291

Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide

J Law Med Ethics. 2015 Fall;43(3):486-501. doi: 10.1111/jlme.12291.

Authors

Susan M Wolf¹, Wylie Burke², Barbara A Koenig³

Affiliations

¹ McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; Faculty member, Center for Bioethics; and Chair, Consortium, on Law and Values in Health, Environment & the Life Sciences at the University of Minnesota. She is one of three Principal Investigators on NIH/NCI/NHGRI grant 1-R01-CA154517 on return of genomic results to family members, including after the death of the proband.
² Professor of Bioethics and Humanities at the University of Washington and Adjunct Professor of Medicine (Medical Genetics). She is the Director of the University of Washington's Center for Genomics and Healthcare Equality, which has been funded by the National Human Genome Research Institute as a Center of Excellence in ELSI Research (CEER).
³ Professor of Bioethics and Medical Anthropology based at the Institute for Health & Aging, University of California, San Francisco. Currently, she co-directs a Center of Excellence in ELSI Research that focuses on translational genomics, co-leads an NCI/NHGRI R01 on return of results in genomic biobanks, and directs the ELSI component of a U19 award focused on newborn screening in an era of whole genome analysis.

Abstract

Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a "layered" approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.

Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide

Authors

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Abstract

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Grants and funding