ArticlePloS one2019
Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research.
Article in PloS one, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 19 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
19 citing papers in PubMed.
- Features and Legal Practice of Dried Blood Spot Card Biobanking in Europe: Balancing Research Potential with Parental and Children's Rights.International journal of neonatal screening · 2026Article
- Mendelian randomization in ovarian research: applications in PCOS, ovarian aging, and assisted reproductive technology.Journal of ovarian research · 2026Review
- Data Management in Biobanking: Strategies, Challenges, and Future Directions.Biotech (Basel (Switzerland)) · 2024Review
- Legal aspects of privacy-enhancing technologies in genome-wide association studies and their impact on performance and feasibility.Genome biology · 2024Review
- Unlocking the potential of big data and AI in medicine: insights from biobanking.Frontiers in medicine · 2024Article
- Risk mapping for better governance in biobanking: the case of biobank.cy.Frontiers in genetics · 2024Article
- Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development.Frontiers in pharmacology · 2024Article
- To donate or not to donate? Future healthcare professionals' opinions on biobanking of human biological material for research purposes.BMC medical ethics · 2023Article
- Genetic and Genomic Researchers' Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Sustained agreement rates in the longitudinal assessment of lupus patients to a Broad Consent for personal data and specimen usage in the RHINEVIT biobank.Frontiers in medicine · 2023Article
- Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance.Life sciences, society and policy · 2021Review
- Returning actionable genomic results in a research biobank: Analytic validity, clinical implementation, and resource utilization.American journal of human genetics · 2021Article
- Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa.BMC medical ethics · 2021Article
- What does engagement mean to participants in longitudinal cohort studies? A qualitative study.BMC medical ethics · 2021Article
- The landscape of biobanks in Poland-characteristics of Polish biobanking units at the beginning of BBMRI.pl organization.Journal of translational medicine · 2021Article
- An agenda-setting paper on data sharing platforms: euCanSHare workshop.Open research Europe · 2021Article
- The Future of Biobanking: What Is Next?Biotech (Basel (Switzerland)) · 2020Article
- The Skeleton in the Closet: Faults and Strengths of Public Versus Private Genetic Biobanks.Biomolecules · 2020Article
- Article
Corrections and comments
- Erratum issued
Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in management or scientific roles in research-based biobanks, who have an important impact on shaping these transformations. In particular, it highlights that recent advances in molecular medicine and genomic research have raised a range of ethical, legal and societal implications (ELSI) related to biobank-based research, impacting directly on regulations and local practices of informed consent (IC), private-public partnerships (PPPs), and engagement of participants. In our study, we investigate the ways that these concerns influence biobanking practices and assess the level of satisfaction of the cross-national biobanking research communities with the ELSI related procedures that are currently in place. We conducted an online survey among biobankers and researchers to investigate secondary use of data, informing and/or re-contacting participants, sharing of data with third parties from industry, participant engagement, and collaboration with industrial partners. Findings highlight the need for a more inclusive and transparent biobanking practice where biobanks are seen in a more active role in providing information and communicating with participants; the need to improve the current IC procedures and the role of biobanks in sharing of samples and data with industry partners and different countries, and the need for practical, tangible and hands-on ethical and legal guidance.
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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.