Biobank participants' preferences for disclosure of genetic research results: perspectives from the OurGenes, OurHealth, OurCommunity project.

ABSTRACT:

Objective

To assess biobank participants' preferences for disclosure of genetic research results.

Patients and methods

We conducted a cross-sectional survey of participants in the OurGenes, OurHealth, OurCommunity biobank. Respondents were surveyed about preferences for disclosure, importance of disclosure, communication of results with practitioners, and sharing of results after respondents' death. Multivariate regression analysis was used to assess independent sociodemographic and clinical predictors of disclosure preferences. Data collection occurred from June 6, 2011, to June 25, 2012.

Results

Among 1154 biobank participants, 555 (48%) responded. Most thought that research result disclosure was important (90%). Preference for disclosure varied, depending on availa

SUBMITTER: Allen NL 

PROVIDER: S-EPMC4148696 | biostudies-literature | 2014 Jun

REPOSITORIES: biostudies-literature