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Soc Sci Med. 2012 Nov;75(9):1604-11. doi: 10.1016/j.socscimed.2012.06.026. Epub 2012 Jul 28.

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

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1
Department of Psychology, University of Guelph, Guelph, ON, Canada, N1G 2W1. kieran.odoherty@uoguelph.ca

Abstract

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.

PMID:
22867865
DOI:
10.1016/j.socscimed.2012.06.026
[Indexed for MEDLINE]
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