TY - JOUR
T1 - New avenues within community engagement
T2 - addressing the ingenuity gap in our approach to health research and future provision of health care
AU - Chalmers, Don
AU - McWhirter, Rebekah E.
AU - Nicol, Dianne
AU - Whitton, Tess
AU - Otlowski, Margaret
AU - Burgess, Michael M.
AU - Foote, Simon J.
AU - Critchley, Christine
AU - Dickinson, Joanne L.
PY - 2014/9/2
Y1 - 2014/9/2
N2 - 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.
AB - 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.
KW - public engagement
KW - biobanking
KW - personalised medicine
KW - deliberative democracy
KW - community consultation
UR - http://purl.org/au-research/grants/arc/DP11010069
UR - http://purl.org/au-research/grants/arc/FT120100623
UR - http://purl.org/au-research/grants/nhmrc/490037
UR - http://www.scopus.com/inward/record.url?scp=85016760777&partnerID=8YFLogxK
U2 - 10.1080/23299460.2014.963002
DO - 10.1080/23299460.2014.963002
M3 - Article
SN - 2329-9037
VL - 1
SP - 321
EP - 328
JO - Journal of Responsible Innovation
JF - Journal of Responsible Innovation
IS - 3
ER -