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. ‘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. 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.
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Conceived and designed the research study: HL and DS. Acquired the data: HL and SS. Analyzed the data: HL, HK and SS. Wrote the manuscript: HL and DS.
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Langhof, H., Kahrass, H., Sievers, S. et al. Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study. Eur J Hum Genet 25, 293–300 (2017). https://doi.org/10.1038/ejhg.2016.172
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DOI: https://doi.org/10.1038/ejhg.2016.172
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