Center Director and Professor Dr. Tom Tomlinson presented a talk on the “Effect of Deliberation on Attitudes Toward Biobank Consent Options” at the International Society for Biological and Environmental Repositories (ISBER) Annual Meeting held in Toronto on May 9-12. The talk presented findings from democratic deliberations held in 2015 as part of a larger NIH-funded project investigating the effect that people’s moral, cultural or social concerns (“non-welfare interests” or NWI) about possible future research uses of donated specimens and data might have on their willingness to donate and on their preferences regarding biobank consents.
The presentation focused on what effect the deliberations in themselves had on preferences among biobank consent options, as opposed to any effects attributable to the educational materials provided during the deliberation day. The study design made it possible to separate these, since participants were randomized into the deliberation group, an education-only group that received paper copies of the presentations with notes, and a control group that received no information. A logistic regression analysis revealed that compared to the education and control groups, the deliberators moved away from a blanket consent to any and all future research uses toward consents that in a variety of ways acknowledged or accommodated donors’ NWIs. These findings supported recommendations for increased transparency, stronger donor participation in biobank governance, and greater efforts to identify concerns among biobanks’ donor communities.