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Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool
journal contributionposted on 2023-05-18, 05:19 authored by Rebekah McWhirterRebekah McWhirter, Christine Critchley, Dianne NicolDianne Nicol, Donald ChalmersDonald Chalmers, Tess WhittonTess Whitton, Margaret OtlowskiMargaret Otlowski, Burgess, MM, Joanne DickinsonJoanne Dickinson
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.
Publication titleJournal of Personalized Medicine
Department/SchoolMenzies Institute for Medical Research
PublisherM D P I AG
Place of publicationSwitzerland
Rights statementCopyright 2014 The Authors-This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution license (http://creativecommons.org/licenses/by/4.0/).