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New avenues within community engagement: addressing the ingenuity gap in our approach to health research and future provision of health care
journal contribution
posted on 2023-05-18, 04:21 authored by Donald ChalmersDonald Chalmers, Rebekah McWhirterRebekah McWhirter, Dianne NicolDianne Nicol, Tess WhittonTess Whitton, Margaret OtlowskiMargaret Otlowski, Burgess, MM, Foote, SJ, Christine Critchley, Joanne DickinsonJoanne DickinsonThe 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.
History
Publication title
Journal of Responsible InnovationPagination
321-328ISSN
2329-9460Department/School
Faculty of LawPublisher
RoutledgePlace of publication
United StatesRights statement
Copyright 2014 Taylor & FrancisRepository Status
- Restricted