ArticleEuropean journal of human genetics : EJHG2017
Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study.
Article in European journal of human genetics : EJHG, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Implementation of data access and use procedures in clinical data warehouses. A systematic review of literature and publicly available policies.BMC medical informatics and decision making · 2020Pooled it
- Transparency in the secondary use of health data: assessing the status quo of guidance and best practices.Royal Society open science · 2025Article
- Biobanking Legislation in Spain: Advancing or Undermining Its Ethical Values?Biopreservation and biobanking · 2024Article
- Developing Policy for the Healthy Life Trajectories Initiative: Going from National to International.Biopreservation and biobanking · 2023Article
- Stakeholder engagement to ensure the sustainability of biobanks: a survey of potential users of biobank services.European journal of human genetics : EJHG · 2022Article
- Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany.European journal of human genetics : EJHG · 2021Article
- Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues.PloS one · 2021Article
- Linking pre-existing biorepositories for medical research: the PopGen 2.0 Network.Journal of community genetics · 2019Article
- Biobanking in health care: evolution and future directions.Journal of translational medicine · 2019Review
- Sharing data for future research-engaging participants' views about data governance beyond the original project: a DIRECT Study.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Raising to the Challenge: Building a Federated Biobank to Accelerate Translational Research-The University Biobank Limburg.Frontiers in medicine · 2019Article
- Current practices for access, compensation, and prioritization in biobanks. Results from an interview study.European journal of human genetics : EJHG · 2018Article
- The author who wasn't there? Fairness and attribution in publications following access to population biobanks.PloS one · 2018Article
- Evolution of biobanks and ethical governance for the emerging applications in biomedical research.Journal of oral and maxillofacial pathology : JOMFPReview
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.