Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool
by
Rebekah E. McWhirter 1,2, Christine R. Critchley 2,3, Dianne Nicol 1,2, Don Chalmers 1,2, Tess Whitton 1,2,*, Margaret Otlowski 2, Michael M. Burgess 4 and Joanne L. Dickinson 1,2,*
Rebekah E. McWhirter 1,2, Christine R. Critchley 2,3, Dianne Nicol 1,2, Don Chalmers 1,2, Tess Whitton 1,2,*, Margaret Otlowski 2, Michael M. Burgess 4 and Joanne L. Dickinson 1,2,*
1
Menzies Institute for Medical Research, University of Tasmania, Hobart TAS 7000, Australia
2
Centre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart TAS 7001, Australia
3
Faculty of Health, Arts and Design, Swinburne University, Melbourne VIC 3122, Australia
4
Maurice Young Centre for Applied Ethics, University of British Columbia, Vancouver, BC V6T 1Z2, Canada
*
Authors to whom correspondence should be addressed.
J. Pers. Med. 2014, 4(4), 459-474; https://doi.org/10.3390/jpm4040459
Received: 27 August 2014 / Revised: 8 October 2014 / Accepted: 12 November 2014 / Published: 20 November 2014
Public trust is critical in any project requiring significant public support, both in monetary terms and to encourage participation. The research community has widely recognized the centrality of public trust, garnered through community consultation, to the success of large-scale epidemiology. This paper examines the potential utility of the deliberative democracy methodology within the public health research setting. A deliberative democracy event was undertaken in Tasmania, Australia, as part of a wider program of community consultation regarding the potential development of a Tasmanian Biobank. Twenty-five Tasmanians of diverse backgrounds participated in two weekends of deliberation; involving elements of information gathering; discussion; identification of issues and formation of group resolutions. Participants demonstrated strong support for a Tasmanian Biobank and their deliberations resulted in specific proposals in relation to consent; privacy; return of results; governance; funding; and, commercialization and benefit sharing. They exhibited a high degree of satisfaction with the event, and confidence in the outcomes. Deliberative democracy methodology is a useful tool for community engagement that addresses some of the limitations of traditional consultation methods.
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Keywords:
community consultation; public engagement; big epidemiology; personalized medicine; biobanks; ethics; deliberative democracy
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MDPI and ACS Style
McWhirter, R.E.; Critchley, C.R.; Nicol, D.; Chalmers, D.; Whitton, T.; Otlowski, M.; Burgess, M.M.; Dickinson, J.L. Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool. J. Pers. Med. 2014, 4, 459-474.
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