Title of Presentation
“Access policies in biobank research: What criteria do they include and how publicly available are they? A cross-sectional study”
Date and Place
Holger Langhof is research fellow at the Institute for History, Ethics and Philosophy of Medicine at Hannover Medical School, Hannover, Germany. He received his B.A. in Sociology from University of Hamburg and a Master of Public Health (MPH) from Hannover Medical School. His recent research activities focus on ethics and governance of biomedical research and health policy analysis.
Background: 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. Methods: Access policies were gathered by hand-searching the websites of international biobanks identified via registries (e.g. BBMRI and P3G), and by additional search strategies. Criteria for access and prioritization were synthesized by thematic analysis. Results: 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. “Scientific quality” criteria were mentioned in 70% of all policies, “value” criteria in 33%, and “ethical soundness” criteria in 73%. Criteria for prioritization were specified in 27% of all policies. Access policies differed broadly in number, specification and operationalization of the included access criteria. Discussion: In order to make biobank research more effective, efficient, and trustworthy, access policies should be more available to the public. Furthermore, access policies should aim for precise and more harmonized wording of access criteria. From a public and governance perspective the issue of how to prioritize access to scarce samples should form part of access policies.