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

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  • O'Doherty, Kieran C.
  • Hawkins, Alice K.
  • Burgess, Michael M.

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.

Suggested Citation

  • O'Doherty, Kieran C. & Hawkins, Alice K. & Burgess, Michael M., 2012. "Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation," Social Science & Medicine, Elsevier, vol. 75(9), pages 1604-1611.
    • Handle: RePEc:eee:socmed:v:75:y:2012:i:9:p:1604-1611
    DOI: 10.1016/j.socscimed.2012.06.026
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    References listed on IDEAS

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    1. Secko, David M. & Preto, Nina & Niemeyer, Simon & Burgess, Michael M., 2009. "Informed consent in biobank research: A deliberative approach to the debate," Social Science & Medicine, Elsevier, vol. 68(4), pages 781-789, February.
    2. Walmsley, Heather L., 2011. "Stock options, tax credits or employment contracts please! The value of deliberative public disagreement about human tissue donation," Social Science & Medicine, Elsevier, vol. 73(2), pages 209-216, July.
    3. Sheila Jasanoff, 2004. "Science and citizenship: a new synergy," Science and Public Policy, Oxford University Press, vol. 31(2), pages 90-94, April.
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    Citations

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    Cited by:

    1. Teare, Harriet & Morrison, M. & Whitley, Edgar A. & Kaye, Jane, 2015. "Towards 'engagement 2.0': insights from a study of dynamic consent with biobank participants," LSE Research Online Documents on Economics 63278, London School of Economics and Political Science, LSE Library.
    2. Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.
    3. Kieran C. O’Doherty & Michael K. MacKenzie & Dan Badulescu & Michael M. Burgess, 2013. "Explosives, Genomics, and the Environment," SAGE Open, , vol. 3(1), pages 21582440134, March.
    4. Baumann, Lisa Ann & Reinhold, Anna Katharina & Brütt, Anna Levke, 2022. "Public and patient involvement in health policy decision-making on the health system level – A scoping review," Health Policy, Elsevier, vol. 126(10), pages 1023-1038.
    5. Yann Joly & Gratien Dalpé & Derek So & Stanislav Birko, 2015. "Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking," PLOS ONE, Public Library of Science, vol. 10(7), pages 1-20, July.
    6. Nicol, Dianne & Critchley, Christine & McWhirter, Rebekah & Whitton, Tess, 2016. "Understanding public reactions to commercialization of biobanks and use of biobank resources," Social Science & Medicine, Elsevier, vol. 162(C), pages 79-87.
    7. Regier, Dean A. & Bentley, Colene & Mitton, Craig & Bryan, Stirling & Burgess, Michael M. & Chesney, Ellen & Coldman, Andy & Gibson, Jennifer & Hoch, Jeffrey & Rahman, Syed & Sabharwal, Mona & Sawka, , 2014. "Public engagement in priority-setting: Results from a pan-Canadian survey of decision-makers in cancer control," Social Science & Medicine, Elsevier, vol. 122(C), pages 130-139.

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