Data

General Issues
Health
Science & Technology
Specific Topics
Biomedical Research & Development
Regulatory Policy
Location
Perth
Western Australia
Australia
Scope of Influence
Regional
Files
Biobanking_Participant_Booklet.pdf
Links
Journal article - "Blueprint for a deliberative public forum on biobanking policy"
Start Date
End Date
Ongoing
No
Time Limited or Repeated?
A single, defined period of time
Purpose/Goal
Make, influence, or challenge decisions of government and public bodies
Approach
Consultation
Spectrum of Public Participation
Involve
Open to All or Limited to Some?
Mixed
Recruitment Method for Limited Subset of Population
Stratified Random Sample
Targeted Demographics
Stakeholder Organizations
People with Disabilities
Indigenous People
General Types of Methods
Deliberative and dialogic process
General Types of Tools/Techniques
Facilitate dialogue, discussion, and/or deliberation
Propose and/or develop policies, ideas, and recommendations
Facilitate decision-making
Specific Methods, Tools & Techniques
Deliberative Forum
Legality
Yes
Facilitators
Yes
Facilitator Training
Trained, Nonprofessional Facilitators
Face-to-Face, Online, or Both
Both
Types of Interaction Among Participants
Discussion, Dialogue, or Deliberation
Ask & Answer Questions
Information & Learning Resources
Written Briefing Materials
Expert Presentations
Decision Methods
General Agreement/Consensus
Communication of Insights & Outcomes
Public Report
Type of Organizer/Manager
Regional Government
Academic Institution
Type of Funder
Regional Government
Staff
Yes
Volunteers
No
Evidence of Impact
Yes
Types of Change
Changes in public policy
Implementers of Change
Elected Public Officials
Formal Evaluation
Yes
Evaluation Report Links
Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?
An Australian Approach to the Policy Translation of Deliberated Citizen Perspectives on Biobanking

CASE

Western Australia Deliberative Public Forums on Biobanking

General Issues
Health
Science & Technology
Specific Topics
Biomedical Research & Development
Regulatory Policy
Location
Perth
Western Australia
Australia
Scope of Influence
Regional
Files
Biobanking_Participant_Booklet.pdf
Links
Journal article - "Blueprint for a deliberative public forum on biobanking policy"
Start Date
End Date
Ongoing
No
Time Limited or Repeated?
A single, defined period of time
Purpose/Goal
Make, influence, or challenge decisions of government and public bodies
Approach
Consultation
Spectrum of Public Participation
Involve
Open to All or Limited to Some?
Mixed
Recruitment Method for Limited Subset of Population
Stratified Random Sample
Targeted Demographics
Stakeholder Organizations
People with Disabilities
Indigenous People
General Types of Methods
Deliberative and dialogic process
General Types of Tools/Techniques
Facilitate dialogue, discussion, and/or deliberation
Propose and/or develop policies, ideas, and recommendations
Facilitate decision-making
Specific Methods, Tools & Techniques
Deliberative Forum
Legality
Yes
Facilitators
Yes
Facilitator Training
Trained, Nonprofessional Facilitators
Face-to-Face, Online, or Both
Both
Types of Interaction Among Participants
Discussion, Dialogue, or Deliberation
Ask & Answer Questions
Information & Learning Resources
Written Briefing Materials
Expert Presentations
Decision Methods
General Agreement/Consensus
Communication of Insights & Outcomes
Public Report
Type of Organizer/Manager
Regional Government
Academic Institution
Type of Funder
Regional Government
Staff
Yes
Volunteers
No
Evidence of Impact
Yes
Types of Change
Changes in public policy
Implementers of Change
Elected Public Officials
Formal Evaluation
Yes
Evaluation Report Links
Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?
An Australian Approach to the Policy Translation of Deliberated Citizen Perspectives on Biobanking

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

Notes