What Research Ethics Should Learn from Genomics and Society Research: Lessons from the ELSI Congress of 2011

Authors

  • Gail E. Henderson,

    1. Professor and Chair of the Department of Social Medicine at the School of Medicine, and Director of the Center for Genomics and Society at the University of North Carolina-Chapel Hill.
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  • Eric T. Juengst,

    1. Director of the UNC Center for Bioethics and Professor in the Departments of Social Medicine and Genetics at the University of North Carolina in Chapel Hill.
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  • Nancy M. P. King,

    1. Professor in the Department of Social Sciences and Health Policy and the Department of Internal Medicine at the Wake Forest Institute for Regenerative Medicine & Translational Science Institute at Wake Forest School of Medicine.
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  • Kristine Kuczynski,

    1. Social Research Associate at the University of North Carolina at Chapel Hill and Project Manager for the Center for Genomics and Society.
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  • Marsha Michie

    1. Post-Doctoral Fellow at the Center for Genomics and Society at the University of North Carolina-Chapel Hill, and was a presenter and a rapporteur at the 2011 ELSI Congress.
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Abstract

Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today's debates over the state of research ethics overall, these studies are well positioned to contribute important data, contextual considerations, and policy arguments to the wider research ethics community's deliberations, and ultimately to develop a research ethics that can help guide biomedicine's future. In this essay, we illustrate this thesis through an analytic summary of the research presented at the 2011 ELSI Congress, an international meeting of genomics and society researchers. We identify three pivotal factors currently shaping genomic research, its clinical translation, and its societal implications: (1) the increasingly blurred boundary between research and treatment; (2) uncertainty — that is, the indefinite, indeterminate, and incomplete nature of much genomic information and the challenges that arise from making meaning and use of it; and (3) the role of negotiations between multiple scientific and non-scientific stakeholders in setting the priorities for and direction of biomedical research, as it is increasingly conducted “in the public square.”

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