Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool

Journal of Personalized Medicine

Rebekah E. McWhirter³  Christine R. Critchley²  Dianne Nicol³  Don Chalmers³  Tess Whitton³  Margaret Otlowski²  Michael M. Burgess¹  Joanne L. Dickinson³ 

[1] W. Maurice Young Centre for Applied Ethics, University of British Columbia, Vancouver, BC V6T 1Z2, Canada; E-Mail:;Centre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart TAS 7001, Australia; E-Mails:;Menzies Institute for Medical Research, University of Tasmania, Hobart TAS 7000, Australia; E-Mails:

关键词: community consultation;    public engagement;    big epidemiology;    personalized medicine;    biobanks;    ethics;    deliberative democracy;   

DOI  :  10.3390/jpm4040459

来源: mdpi

【 摘 要 】

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.

【 授权许可】

CC BY   
© 2014 by the authors; licensee MDPI, Basel, Switzerland.