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. 2014 Nov 20;4(4):459-74.
doi: 10.3390/jpm4040459.

Community engagement for big epidemiology: deliberative democracy as a tool

Rebekah E McWhirter  1 , Christine R Critchley  2 , Dianne Nicol  3 , Don Chalmers  4 , Tess Whitton  5 , Margaret Otlowski  6 , Michael M Burgess  7 , Joanne L Dickinson  8
Affiliations

Community engagement for big epidemiology: deliberative democracy as a tool

Rebekah E McWhirter et al. J Pers Med. .

Abstract

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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Figures

Figure 1
Figure 1
Content and structure of the deliberative democracy event.
Figure 2
Figure 2
Participant outcomes with large group ratification results (Agree-Disagree%).
Figure 3
Figure 3
Percentages of participants selecting each attribute that described their feelings about the event.
See this image and copyright information in PMC

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