Effect of deliberation on the public’s attitudes toward consent policies for biobank research

  • European Journal of Human Geneticsvolume 26pages176185 (2018)
  • doi:10.1038/s41431-017-0063-5
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In this study, we evaluate the effect of education and deliberation on the willingness of members of the public to donate tissue to biobank research and on their attitudes regarding various biobank consent policies. Participants were randomly assigned to a democratic deliberation (DD) group, an education group that received only written materials, and a control group. Participants completed a survey before the deliberation and two surveys post-deliberation: one on (or just after) the deliberation day, and one 4 weeks later. Subjects were asked to rate 5 biobank consent policies as acceptable (or not) and to identify the best and worst policies. Analyses compared acceptability of different policy options and changes in attitudes across the three groups. After deliberation, subjects in the DD group were less likely to find broad consent (defined here as consent for the use of donations in an unspecified range of future research studies, subject to content and process restrictions) and study-by-study consent acceptable. The DD group was also significantly less likely to endorse broad consent as the best policy (OR = 0.34), and more likely to prefer alternative consent options. These results raise ethical challenges to the current widespread reliance on broad consent in biobank research, but do not support study-by-study consent.

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The work was supported by grant 1 R01 HG007172-01A1 from the National Human Genome Research Institute, National Institutes of Health, USA.

Author information


  1. Center for Ethics and Humanities in the Life Sciences, Michigan State University, East Lansing, MI, USA

    • Tom Tomlinson
    •  & Linda Gordon
  2. Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School, Ann Arbor, MI, USA

    • Raymond G. De Vries
    • , Kerry A. Ryan
    •  & Chris D. Krenz
  3. Department of Biostatistics, University of Michigan, Ann Arbor, MI, USA

    • H. Myra Kim
  4. Van Andel Research Institute, Grand Rapids, MI, USA

    • Scott Jewell
  5. Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD, USA

    • Scott Y. H. Kim
  6. Department of Psychiatry, University of Michigan, Ann Arbor, MI, USA

    • Scott Y. H. Kim


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Conflict of interest

The authors declare that they have no conflict of interest.

Corresponding author

Correspondence to Tom Tomlinson.

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