Public deliberation to develop ethical norms and inform policy for biobanks: Lessons learnt and challenges remaining

TitlePublic deliberation to develop ethical norms and inform policy for biobanks: Lessons learnt and challenges remaining
Publication TypeJournal Article
Year of Publication2013
AuthorsO’Doherty, KC, Burgess, MM
JournalResearch Ethics
Volume9
Issue2
Pagination55-77
Date Published2013
Publication Languageeng
KeywordsBIOBANKS , Biomedical , deliberation , ELSI , Medical , minipublic , NORMATIVITY , Pharmaceutical , PUBLIC , research
AbstractPublic participation is increasingly an aspect of policy development in many areas, and the governance of biomedical research is no exception. There are good reasons for this: biomedical research relies on public funding; it relies on biological samples and information from large numbers of patients and healthy individuals; and the outcomes of biomedical research are dramatically and irrevocably changing our society. There is thus arguably a democratic imperative for including public values in strategic decisions about the governance of biomedical research. However, it is not immediately clear how this might best be achieved. While different approaches have been proposed and trialled, we focus here on the use of public deliberation as a mechanism to develop input for policy on biomedical research. We begin by explaining the rationale for conducting public deliberation in biomedical research. We focus, in particular, on the ELS (ethical, legal, social) aspects of human tissue biobanking. The last few years have seen the development of methods for conducting public deliberation on these issues in several jurisdictions, for the purpose of incorporating lay public voices in biobanking policy. We explain the theoretical foundation underlying the notion of deliberation, and outline the main lessons and capacities that have been developed in the area of conducting public deliberation on biobanks. We next provide an analysis of the theoretical and practical challenges that we feel still need to be addressed for the use of public deliberation to guide ethical norms and governance of biomedical research. We examine the issues of: (i) linking the outcomes of deliberation to tangible action; (ii) the mandate under which a deliberation is conducted; (iii) the relative weight that should be accorded to a public deliberative forum vs other relevant voices; (iv) evaluating the quality of deliberation; and (5) the problem of scalability of minipublics. [ABSTRACT FROM AUTHOR]Copyright of Research Ethics is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
NotesO’Doherty, Kieran C Burgess, Michael M; Source Info: Jun2013, Vol. 9 Issue 2, p55; Subject Term: MEDICAL research; Subject Term: DELIBERATION; Subject Term: NORMATIVITY (Ethics); Subject Term: BIOBANKS; Subject Term: PHARMACEUTICAL policy; Subject Term: RESEARCH -- Methodology; Author-Supplied Keyword: biobanks; Author-Supplied Keyword: biomedical research; Author-Supplied Keyword: ELSI; Author-Supplied Keyword: minipublic; Author-Supplied Keyword: public deliberation; NAICS/Industry Codes: 541712 Research and Development in the Physical, Engineering, and Life Sciences (except Biotechnology); NAICS/Industry Codes: 424210 Drugs and Druggists' Sundries Merchant Wholesalers; NAICS/Industry Codes: 414510 Pharmaceuticals and pharmacy supplies merchant wholesalers; NAICS/Industry Codes: 325410 Pharmaceutical and medicine manufacturing; Number of Pages: 23p; Document Type: Article
DOI10.1177/1747016113488858

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