Center Director and Professor Dr. Tom Tomlinson is first author of the article “Effect of deliberation on the public’s attitudes toward consent policies for biobank research,” published in the February 2018 issue of the European Journal of Human Genetics. The work of Dr. Tomlinson and co-authors Raymond G. De Vries, H. Myra Kim, Linda Gordon, Kerry A. Ryan, Chris D. Krenz, Scott Jewell, and Scott Y. H. Kim was supported by the NIH-funded project “Public Preferences for Addressing Donors’ Moral Concerns about Biobank Research.”
Abstract: 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.
The full text is available online through Springer Nature (MSU Library or other institutional access may be required to view this article).