Public deliberation to develop ethical norms and inform policy for biobanks: Lessons learnt and challenges remaining
- 14 June 2013
- journal article
- research article
- Published by SAGE Publications in Research Ethics
- Vol. 9 (2), 55-77
- https://doi.org/10.1177/1747016113488858
Abstract
Public 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.Keywords
This publication has 36 references indexed in Scilit:
- Assessing the quality of democratic deliberation: A case study of public deliberation on the ethics of surrogate consent for researchSocial Science & Medicine (1982), 2010
- Broad Consent in Biobanking: Reflections on Seemingly Insurmountable DilemmasMedical Law International, 2009
- Who's minding the shop? The role of Canadian research ethics boards in the creation and uses of registries and biobanksBMC Medical Ethics, 2008
- Hearing community voices: public engagement in Australian human embryo research policy, 2005–2007New Genetics and Society, 2008
- Biobanking in British Columbia: discussions of the future of personalized medicine through deliberative public engagementPersonalized Medicine, 2008
- Trends in ethical and legal frameworks for the use of human biobanksEuropean Respiratory Journal, 2007
- Enfranchising All Affected Interests, and Its AlternativesPhilosophy & Public Affairs, 2007
- DELIBERATIVEDEMOCRATICTHEORYAnnual Review of Political Science, 2003
- Assessing a controversial medical technology: Canadian public consultations on xenotransplantationPublic Understanding of Science, 2002
- Legitimacy and Economy in Deliberative DemocracyPolitical Theory, 2001