Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study.

ABSTRACT: Access policies of biobanks specify the governance of sample and data sharing. Basic guidance on relevant access criteria exists, but so far little is known about their public availability and what criteria for access and prioritization they actually include. Access policies were gathered by hand searching the websites of biobanks identified via registries (eg, BBMRI and P3G), and by additional search strategies. Criteria for access and prioritization were synthesized by thematic analysis. Of 523 biobank websites screened, 9% included a publicly available access policy. With all applied search strategies, we finally retrieved 74 access policies. Thematic analysis resulted in 62 different access criteria in three main categories: (a) scientific quality, (b) value and (c) ethical soundness.

SUBMITTER: Langhof H 

PROVIDER: S-EPMC5315509 | biostudies-literature | 2017 Feb

REPOSITORIES: biostudies-literature