Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation

This paper reports on the design, implementation, and results of a structured public deliberation on human tissue biobanking conducted in Vancouver, Canada, in 2009. This study builds on previous work on the use of deliberative democratic principles and methods to engage publics on the social and ethical implications of human tissue biobanking. In a significant refinement of methods, we focus on providing public input to institutional practice and governance of biobanks using a tailored workbook structure to guide participants' discussion. Our focus is on the local context and practices of a particular institution, the BC BioLibrary. However, elements of both the methodological innovations and the ethical guidance implied by our findings are generalisable for biobanking internationally. Recommendations from the deliberative forum include issues of informed consent, privacy protections, collection of biospecimens, governance of biobanks, and how to manage the process of introduction between biobanks and potential donors. Notable findings include public support for research use of anonymised un-consented tissue samples when these come from archived collections, but lack of support when they are collected prospectively. ► There are considerable social and ethical challenges associated with human tissue biobanks. ► Public deliberation offers an important avenue for appropriate social norms to be developed and communicated to policy makers. ► This study demonstrates a structured approach to public deliberation that allows for greater facility in translating public values into policy. ► Conducted in March of 2009 in Vancouver, Canada, the study focuses on local institutional biobanking practices of the BC BioLibrary. ► Implications of the study have broader relevance for international debates on the ethics and governance of biobanks.