title: Community engagement for big epidemiology: deliberative democracy as a tool.
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.
authors.affiliation: Menzies Institute for Medical Research, University of Tasmania, Hobart TAS 7000, Australia. Rebekah.McWhirter@utas.edu.au.
authors.forename: Rebekah E
authors.initials: RE
authors.lastname: McWhirter
authors.affiliation: Centre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart TAS 7001, Australia. ccritchley@swin.edu.au.
authors.forename: Christine R
authors.initials: CR
authors.lastname: Critchley
authors.affiliation: Menzies Institute for Medical Research, University of Tasmania, Hobart TAS 7000, Australia. Dianne.Nicol@utas.edu.au.
authors.forename: Dianne
authors.initials: D
authors.lastname: Nicol
authors.affiliation: Menzies Institute for Medical Research, University of Tasmania, Hobart TAS 7000, Australia. Don.Chalmers@utas.edu.au.
authors.forename: Don
authors.initials: D
authors.lastname: Chalmers
authors.affiliation: Menzies Institute for Medical Research, University of Tasmania, Hobart TAS 7000, Australia. Tess.Whitton@utas.edu.au.
authors.forename: Tess
authors.initials: T
authors.lastname: Whitton
authors.affiliation: Centre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart TAS 7001, Australia. Margaret.Otlowski@utas.edu.au.
authors.forename: Margaret
authors.initials: M
authors.lastname: Otlowski
authors.affiliation: Maurice Young Centre for Applied Ethics, University of British Columbia, Vancouver, BC V6T 1Z2, Canada. Michael.burgess@ubc.ca.
authors.forename: Michael M
authors.initials: MM
authors.lastname: Burgess
authors.affiliation: Menzies Institute for Medical Research, University of Tasmania, Hobart TAS 7000, Australia. Jo.Dickinson@utas.edu.au.
authors.forename: Joanne L
authors.initials: JL
authors.lastname: Dickinson