Non-welfare interests and biobanking

Clinical Center

Investigators

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. During the past year, two papers reporting on the deliberation sessions were accepted: Tom Tomlinson T, De Vries RG, Kim HM, Gordon L, Krenz CD, Ryan KA, Jewell S, Kim SYH. Effect of Deliberation on the Publics Attitudes Toward Consent Policies for Biobank Research. European Journal of Human Genetics. Accepted De Vries RG, Ryan K, Gordon L, Krenz CD, Tomlinson T, Kim SYH. Should Biobanks Take into Account Donors Moral Concerns? A Public Deliberation. Accepted.