Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?

TitleBlueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?
Publication TypeJournal Article
Year of Publication2013
AuthorsMolster C, Maxwell S, Youngs L, Kyne G, Hope F, Dawkins H, O'Leary P
JournalHealth expectations : an international journal of public participation in health care and health policy
Date Published2013 Jun
KeywordsAdolescent; Adult; Aged; Biological Specimen Banks; Consumer Participation; Female; Health Policy; Humans; Male; Middle Aged; Policy Making; Public Opinion; Social Responsibility; Western Australia; Young Adult
AbstractBACKGROUND: Public deliberation is recommended for obtaining citizen input to policy development when policies involve contested ethical dimensions, diverse perspectives on how to trade-off competing public interests and low public awareness of these perspectives. Several norms have been proposed for the design of deliberative methods. Evidence is scarce regarding whether such norms are achievable in practice. PURPOSE: This paper refers to principles of deliberative democracy theory to describe a deliberative public forum on biobanking. Practical challenges and contextual facilitators of achieving deliberative ideals are discussed, along with factors that influenced use of the forum output in policy development. METHOD: The forum ran for 4 days over two weekends in Perth, Western Australia. Key methodological features were socio-demographic stratification to randomly recruit a mini-public of citizens for discursive representation, provision of information inclusive of diverse perspectives and framed for difference, provision of a fair way for reasoning and collective decision making and adoption of processes to achieve publicity, accountability and independence from undue institutional influence. RESULTS: Most design principles were achieved in practice, with the fundamental exception of representativeness. Factors influencing these outcomes, and the use of deliberated outputs to develop policy, included institutional characteristics, the design involvement of deliberative experts and quality of the outputs when compared to other consultation methods. CONCLUSIONS: Public deliberations can achieve design ideals and influence (ethics-based) public health policy. The representation of 'hard to reach' citizens and their views needs further consideration, particularly as this relates to the procedural legitimacy of ethical analyses and the just inclusion of deliberative citizen advice within the broader policy-making process.
Alternate JournalHealth Expect