ArticleEuropean journal of human genetics : EJHG2018
Current practices for access, compensation, and prioritization in biobanks. Results from an interview study.
Article in European journal of human genetics : EJHG, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 2 of them syntheses that pooled it.
What it found
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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, 2 syntheses or guidelines pooled it, 26 citations in OpenAlex.
- The ethical and legal landscape of brain data governance.PloS one · 2022Pooled 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
- Establishing a Pregnancy Lyme Disease Biobank.Methods in molecular biology (Clifton, N.J.) · 2024Article
- Improving Public Trust in Biobanking: Roundtable Discussions from the 2021 ISBER Annual Meeting.Biopreservation and biobanking · 2023Article
- Collection and use of human materials during TB clinical research; a review of practices.BMC medical ethics · 2022Review
- Paediatric biobanking for health: The ethical, legal, and societal landscape.Frontiers in public health · 2022Review
- A framework for ethics review of applications to store, reuse and share tissue samples.Monash bioethics review · 2021Article
- Public awareness of and attitudes towards research biobanks in Latvia.BMC medical ethics · 2020Article
- The urgency of utilizing COVID-19 biospecimens for research in the heart of the global pandemic.Journal of translational medicine · 2020Article
- Bridging the Collaboration Gap: Real-time Identification of Clinical Specimens for Biomedical Research.Journal of pathology informatics · 2020Article
- Purification of viable peripheral blood mononuclear cells for biobanking using a robotized liquid handling workstation.Journal of translational medicine · 2019Article
- Biobanking in health care: evolution and future directions.Journal of translational medicine · 2019Review
- Population's perspectives toward biobanks in scientific research: a study from Jordan.Pharmacogenomics and personalized medicine · 2019Article
- Supporting Stewardship: Funding, Utilization, and Sustainability as Ethical Concerns in Networked Biobanking.AJOB empirical bioethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Human biological materials and related data stored in biobanks are valuable resources for biomedical research. Transparent, effective, and efficient governance structures and procedures for access, compensation, and priority setting are needed, but recent debates indicate challenges in the practical application of such governance processes. This study aimed to assess the practical experiences and attitudes of biobank experts regarding the governance of biosample access, prioritization, and compensation. Qualitative, semi-structured telephone interviews were conducted with 20 biobank directors from eight countries. Respondents highlighted the need for sound governance structures in order to ensure acceptance by all stakeholders (patients/donors, researchers, research funders, public, and others). They stressed practical difficulties in trying to make best use of biomaterials. As biobanks often form part of larger academic and clinical settings, the different and sometimes conflicting interests of researchers, clinicians, patients, funders, and biobank staff currently affect the governance of access decisions. Investments such as intellectual input, financial, and human resources need to be compensated adequately. Biobanks thereby have a dual role stewarding the hosted biosamples and acting as a service provider for local researchers from universities or hospitals. In order to facilitate efficient use of human biological materials, greater harmonization of at least minimum standards for access and compensation are required at both a national and an international level.
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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.