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2017 ; 25
(3
): 293-300
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Access policies in biobank research: what criteria do they include and how
publicly available are they? A cross-sectional study
#MMPMID28000694
Langhof H
; Kahrass H
; Sievers S
; Strech D
Eur J Hum Genet
2017[Feb]; 25
(3
): 293-300
PMID28000694
show ga
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.