Western Australia's Department of Health commissioned two deliberative forums - one with the public, and one with stakeholders - to inform biobanking policy and regulation. The majority of recommendations were included in the final legislation.
Problems and Purpose
Two deliberative forums were commissioned by the Government of Western Australia Department of Health’s to inform the development of policy guidelines for human biobanks, genetic research databases, and associated data.[1] The first deliberation involved stakeholders randomly selected from members of genetic support groups while the second forum involved a stratified random sample of Western Australians.[2] The stakeholder forum was intended was intended to inform policy for the Genetic Support Council of WA while the public forum would inform WA Health’s new policy Guidelines for Human Biobanks, Genetic Research and Associated Data.[3]
Background History and Context
Organizing, Supporting, and Funding Entities
Participant Recruitment and Selection
Methods and Tools Used
Community consultations on the Guidelines were to be both wide-ranging and informed. On the first point, a number of engagement methods were pursued including an interdepartmental Stakeholder Group, two stakeholder advisory committees, and targeted and public invitations to comment.[4] Informed consultations were achieved through the use of two deliberative public forums using the methodology pioneered during the BC Biobank Deliberations in 2007 and replicated by the Mayo Clinic later the same year.[5]
What Went On: Process, Interaction, and Participation
Influence, Outcomes, and Effects
The majority of recommendations developed during the deliberative event and included in the final report were addressed or integrated into the final biobank policy.[6]
Analysis and Lessons Learned
See Also
The W. Maurice Young Centre for Applied Ethics
Biobanking in British Columbia
Tasmanian Deliberation on Biobanks
References
[1] Office of Population Health Genomics, 'Guidelines for human biobanks, genetic research databases and associated data', WA Health, August 16, 2010, https://ww2.health.wa.gov.au/About-us/Policy-frameworks/Supporting-information/Mandatory-requirements/Research/Guidelines-for-human-biobanks-genetic-research-databases-and-associated-data.
[2] Leanne Youngs, Hugh Dawkins, Caron Molster, Peter O’Leary, 'Stakeholder engagement as an integral part of biobanks policy development', Office of Population Health Genomics, May 2009, archived at: https://web.archive.org/web/20110220093550/http://www.genomics.health.wa.gov.au/publications/gfhc_stakeholder.cfm.
[3] Office of Population Health Genomics, 'Guidelines for human biobanks.'
[4] Molser, C. et al, 'Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?', Health Expectations, 16/2 (2013), pp. 211-24, https://www.ncbi.nlm.nih.gov/pubmed/21645188
[5] Burgess, M. M., Longstaff, H., O’Doherty, K., ‘Assessing Deliberative Design of Public Input on British Columbia Biobanks’, in Dodds, S. and Ankeny, R. A. (eds), Big Picture Bioethics: Developing Democratic Policy in Contested Domains (Switzerland: Springer International Publishing, 2016).
[6] Molster, C. et al, ‘An Australian Approach to the Policy Translation of Deliberated Citizen Perspectives on Biobanking’, Public Health Genomics, 12/2 (2011), pp. 84-91, <https://doi.org/10.1159/000164684>, accessed 13 July 2019
External Links
WA Office of Population Health Genomics