New avenues within community engagement: addressing the ingenuity gap in our approach to health research and future provision of health care

Don Chalmers, Rebekah E. McWhirter, Dianne Nicol, Tess Whitton, Margaret Otlowski, Michael M. Burgess, Simon J. Foote, Christine Critchley, Joanne L. Dickinson

    Research output: Contribution to journalArticlepeer-review

    8 Citations (Scopus)

    Abstract

    The proliferation of large biorepositories and the staggering advances in our ability to analyse large numbers of human genomes relatively quickly and cost-effectively have been important drivers in the move towards personalised medicine. However, our advances in the development of these tools have outstripped our performance in addressing the issues of ethics and consent surrounding health policy and governance of such repositories, the implications of proliferation of genomic information for the individual and its potential for misuse. Public consultation is urgently needed in the development of ethical guidelines for these emergent issues; however, effective strategies for facilitating community engagement and informed debate have been lacking. Public consultation through deliberative democracy is bringing an essential new dimension to public engagement in the genomic medicine era.
    Original languageEnglish
    Pages (from-to)321-328
    Number of pages8
    JournalJournal of responsible innovation
    Volume1
    Issue number3
    DOIs
    Publication statusPublished - 2 Sep 2014

    Keywords

    • public engagement
    • biobanking
    • personalised medicine
    • deliberative democracy
    • community consultation

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