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

Abstract

Background: Public deliberation is recommended for obtaining citizeninput to policy development when policies involve contested ethicaldimensions, diverse perspectives on how to trade-off competing publicinterests and low public awareness of these perspectives. Several normshave been proposed for the design of deliberative methods. Evidence isscarce regarding whether such norms are achievable in practice.Purpose: This paper refers to principles of deliberative democracytheory to describe a deliberative public forum on biobanking.Practical challenges and contextual facilitators of achieving deliberativeideals are discussed, along with factors that influenced use ofthe forum output in policy development.Method: The forumranfor4 daysovertwoweekends inPerth,WesternAustralia. Key methodological features were socio-demographic stratificationto randomly recruit a mini-public of citizens for discursiverepresentation,provisionof informationinclusiveofdiverseperspectivesand framed for difference, provision of a fair way for reasoning andcollectivedecisionmakingandadoptionofprocessestoachievepublicity,accountability and independence from undue institutional influence.Results: Most design principles were achieved in practice, with thefundamental exception of representativeness. Factors influencingthese outcomes, and the use of deliberated outputs to develop policy,included institutional characteristics, the design involvement ofdeliberative experts and quality of the outputs when compared toother consultation methods.Conclusions: Public deliberations can achieve design ideals andinfluence (ethics-based) public health policy. The representation ofhard to reach citizens and their views needs further consideration,particularly as this relates to the procedural legitimacy of ethicalanalyses and the just inclusion of deliberative citizen advice withinthe broader policy-making process.