Non-welfare interests and biobanking

Clinical Center

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Linked publications & trials

Abstract

This project has two subparts. First, a nationally representative survey of US adults assessing their views on the importance of non-welfare interests when considering informed consent for biobank donations., as well as their views on acceptable consent policies. Second, a deliberative democratic assessment of the same domains as a complement to the traditional survey method. Main results paper for the national survey has been published and a second paper is in progress. The deliberation sessions are being conducted. We published the following in the past year: De Vries, R. G., Tomlinson, T., Kim, H. M., Krenz, C., Haggerty, D., Ryan, K. A., & Kim, S. Y. (2016). Understanding the Public's Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey. PLoS ONE, 11(7), e0159113. doi: 10.1371/journal.pone.0159113 De Vries RG, Tomlinson T, Kim HM, Krenz CD, Ryan KA, Lehpamer NL, Kim SYH. The Moral Concerns of Biobank Donors: The Effect of Non-Welfare Interests on Willingness to Donate. Life Sciences, Society and Policy. 2016; 12(3). DOI:10.1186/s40504-016-0036-4