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Chunk #46 — (3) Negotiating Genomics in the Public Square16 — (b) Negotiating the Driving Hypotheses of Translational Genomic Research

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What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
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Proponents of genomic medicine assume that the best way to improve health care is to understand human genomic variation and the regulation of human gene expression at as high a level of resolution as possible. Translational genomic research priorities are set in terms of these assumptions. But depending on the assumptions they make and the questions they address, studies of the relevance of human genomic variation and gene expression to human health can implicate the social, political, and economic interests of many stakeholders, from individuals and families to communities and populations. For both genome scientists and these other stakeholders, these competing interests raise normative questions about who should be involved in the framing of particular translational genomic research hypotheses and how genomic research results should be publicly interpreted, commercially developed, and clinically applied, if we are to avoid disadvantaging those the research is intended to help.