Community recommendations on biobank governance: Results from a deliberative community engagement in California.

ABSTRACT: United States-based biorepositories are on the cusp of substantial change in regulatory oversight at the same time that they are increasingly including samples and data from large populations, e.g. all patients in healthcare system. It is appropriate to engage stakeholders from these populations in new governance arrangements. We sought to describe community recommendations for biorepository governance and oversight using deliberative community engagement (DCE), a qualitative research method designed to elicit lay perspectives on complex technical issues. We asked for stakeholders to provide input on governance of large biorepositories at the University of California (UC), a public university. We defined state residents as stakeholders and recruited residents from two large metropolitan ar

SUBMITTER: Dry SM 

PROVIDER: S-EPMC5325297 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature