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Informed consent in biobank research: A deliberative approach to the debate

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  • Secko, David M.
  • Preto, Nina
  • Niemeyer, Simon
  • Burgess, Michael M.

Abstract

As acknowledged in the literature, public consultation related to biobanks has been largely oriented to assuring and informing rather than seeking considered input. In April and May of 2007, the authors participated in running a deliberative public engagement event in British Columbia, Canada, which sought to enhance public input related to the governance of biobanks. The topic of the event was 'Biobanking in British Columbia (BC)' and at the event a random-digit dialed demographically stratified sample of 21 participants deliberated on what values and interests ought to be considered in the regulation and use of biobanks for health research. In this paper, we report results related to debate over the place of informed consent in biobank research. Drawing on a pre/post-survey and qualitative analysis of event transcripts, we show that participants indicated strong support for biobanks, for a general reduction in concern for withdrawal of samples, and placed a strong emphasis on the need for review of biobanks research that is independent of funders and researchers. In this context, there was persistent disagreement about when consent was required for new research activities.

Suggested Citation

  • 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.
    • Handle: RePEc:eee:socmed:v:68:y:2009:i:4:p:781-789
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    References listed on IDEAS

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    1. Miller, Tina & Boulton, Mary, 2007. "Changing constructions of informed consent: Qualitative research and complex social worlds," Social Science & Medicine, Elsevier, vol. 65(11), pages 2199-2211, December.
    2. Abelson, Julia & Forest, Pierre-Gerlier & Eyles, John & Smith, Patricia & Martin, Elisabeth & Gauvin, Francois-Pierre, 2003. "Deliberations about deliberative methods: issues in the design and evaluation of public participation processes," Social Science & Medicine, Elsevier, vol. 57(2), pages 239-251, July.
    3. Boulton, Mary & Parker, Michael, 2007. "Informed consent in a changing environment," Social Science & Medicine, Elsevier, vol. 65(11), pages 2187-2198, December.
    4. Burgess, Michael M., 2007. "Proposing modesty for informed consent," Social Science & Medicine, Elsevier, vol. 65(11), pages 2284-2295, December.
    5. Kent, Gerry, 1996. "Shared understandings for informed consent: The relevance of psychological research on the provision of information," Social Science & Medicine, Elsevier, vol. 43(10), pages 1517-1523, November.
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    1. 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.
    2. De Vries, Raymond & Stanczyk, Aimee & Wall, Ian F. & Uhlmann, Rebecca & Damschroder, Laura J. & Kim, Scott Y., 2010. "Assessing the quality of democratic deliberation: A case study of public deliberation on the ethics of surrogate consent for research," Social Science & Medicine, Elsevier, vol. 70(12), pages 1896-1903, June.
    3. Street, Jackie & Duszynski, Katherine & Krawczyk, Stephanie & Braunack-Mayer, Annette, 2014. "The use of citizens' juries in health policy decision-making: A systematic review," Social Science & Medicine, Elsevier, vol. 109(C), pages 1-9.
    4. 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.
    5. 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.
    6. Nicole Curato & Marit Böker, 2016. "Linking mini-publics to the deliberative system: a research agenda," Policy Sciences, Springer;Society of Policy Sciences, vol. 49(2), pages 173-190, June.
    7. Melanie Goisauf & Gillian Martin & Heidi Beate Bentzen & Isabelle Budin-Ljøsne & Lars Ursin & Anna Durnová & Liis Leitsalu & Katharine Smith & Sara Casati & Marialuisa Lavitrano & Deborah Mascalzoni &, 2019. "Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research," PLOS ONE, Public Library of Science, vol. 14(9), pages 1-22, September.

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