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Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool


McWhirter, RE and Critchley, CR and Nicol, D and Chalmers, DRC and Whitton, TC and Otlowski, MFA and Burgess, MM and Dickinson, JL, Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool, Journal of Personalized Medicine, 4, (4) pp. 459-474. ISSN 2075-4426 (2014) [Refereed Article]


Copyright Statement

Copyright 2014 The Authors-This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution license (

DOI: doi:10.3390/jpm4040459


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.

Item Details

Item Type:Refereed Article
Keywords:Community, consultation; public engagement; big epidemology; personalized medicine; biobanks; ethics; deliberative democracy
Research Division:Philosophy and Religious Studies
Research Group:Applied ethics
Research Field:Bioethics
Objective Division:Health
Objective Group:Other health
Objective Field:Other health not elsewhere classified
UTAS Author:McWhirter, RE (Dr Rebekah McWhirter)
UTAS Author:Critchley, CR (Associate Professor Christine Critchley)
UTAS Author:Nicol, D (Professor Dianne Nicol)
UTAS Author:Chalmers, DRC (Professor Don Chalmers)
UTAS Author:Whitton, TC (Ms Tess Whitton)
UTAS Author:Otlowski, MFA (Professor Margaret Otlowski)
UTAS Author:Dickinson, JL (Professor Joanne Dickinson)
ID Code:96809
Year Published:2014
Deposited By:Faculty of Law
Deposited On:2014-11-21
Last Modified:2015-05-05
Downloads:207 View Download Statistics

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