Non-welfare interests and biobanking

Clinical Center

Investigators

Linked publications, trials & patents

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. The deliberation sessions are finished. Main results from the national survey have been published; the quantitative portion of the deliberation sessions are being published, and analysis of qualitative data is coming to an end.