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

Wylie Burke, Paul Appelbaum, Lauren Dame, Patricia Marshall, Nancy Press, Reed Pyeritz, Richard Sharp, Eric Juengst

    Research output: Contribution to journalArticle

    7 Citations (Scopus)

    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.

    Original languageEnglish (US)
    Pages (from-to)12-20
    Number of pages9
    JournalGenetics in Medicine
    Volume17
    Issue number1
    DOIs
    StatePublished - Jan 10 2015

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    Translational Medical Research
    Genomics
    Research
    Social Sciences
    Policy Making
    Research Personnel
    Bioethics
    Medical Genetics
    Program Evaluation
    Health Policy
    Administrative Personnel

    Keywords

    • ethical
    • genomic policy
    • legal
    • social

    ASJC Scopus subject areas

    • Genetics(clinical)

    Cite this

    The translational potential of research on the ethical, legal, and social implications of genomics. / Burke, Wylie; Appelbaum, Paul; Dame, Lauren; Marshall, Patricia; Press, Nancy; Pyeritz, Reed; Sharp, Richard; Juengst, Eric.

    In: Genetics in Medicine, Vol. 17, No. 1, 10.01.2015, p. 12-20.

    Research output: Contribution to journalArticle

    Burke, W, Appelbaum, P, Dame, L, Marshall, P, Press, N, Pyeritz, R, Sharp, R & Juengst, E 2015, 'The translational potential of research on the ethical, legal, and social implications of genomics', Genetics in Medicine, vol. 17, no. 1, pp. 12-20. https://doi.org/10.1038/gim.2014.74
    Burke, Wylie ; Appelbaum, Paul ; Dame, Lauren ; Marshall, Patricia ; Press, Nancy ; Pyeritz, Reed ; Sharp, Richard ; Juengst, Eric. / The translational potential of research on the ethical, legal, and social implications of genomics. In: Genetics in Medicine. 2015 ; Vol. 17, No. 1. pp. 12-20.
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