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Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool

Citation

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]


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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 (http://creativecommons.org/licenses/by/4.0/).

DOI: doi:10.3390/jpm4040459

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.

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 (human and animal)
Objective Division:Health
Objective Group:Other Health
Objective Field:Health not elsewhere classified
Author:McWhirter, RE (Dr Rebekah McWhirter)
Author:Critchley, CR (Associate Professor Christine Critchley)
Author:Nicol, D (Professor Dianne Nicol)
Author:Chalmers, DRC (Professor Don Chalmers)
Author:Whitton, TC (Ms Tess Whitton)
Author:Otlowski, MFA (Professor Margaret Otlowski)
Author:Dickinson, JL (Associate 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:70 View Download Statistics

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