ArticleJournal of medical ethics2022
What can data trusts for health research learn from participatory governance in biobanks?
Article in Journal of medical ethics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis 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
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 32 citations in OpenAlex.
- Non-empirical methods for ethics research on digital technologies in medicine, health care and public health: a systematic journal review.Medicine, health care, and philosophy · 2024Pooled it
- Unfolding the policy dynamics of medical data assetization in Chinese public healthcare institutions: evidence from Latent Dirichlet Allocation and dynamic topic modeling analysis.Frontiers in public health · 2026Article
- Developing a Data Trust Model (Not Only) for Sleep Research: Conceptual Study and Quantitative Survey.JMIR human factors · 2025Article
- Bridging Ontologies of Neurological Conditions: Towards Patient-centered Data Practices in Digital Phenotyping Research and Design.Proceedings of the ACM on human-computer interaction · 2025Article
- Development of a big data platform for collecting and utilizing clinical information from the Korea Biobank Network.BMC medical informatics and decision making · 2025Article
- Exploring the implementation of a data trust committee: a qualitative evaluation of processes and practices.Research involvement and engagement · 2025Article
- Secondary use under the European Health Data Space: setting the scene and towards a research agenda on privacy-enhancing technologies.Frontiers in digital health · 2025Article
- Public Involvement and Engagement in Big Data Research: Scoping Review.Journal of participatory medicine · 2024Article
- Trust and Support for Cancer Research Biobanks: Insights from Cancer Patients in Poland.Medical science monitor : international medical journal of experimental and clinical research · 2024Article
- Ethical and social reflections on the proposed European Health Data Space.European journal of human genetics : EJHG · 2024Article
- Achieving Procedural Parity in Managing Access to Genomic and Related Health Data: A Global Survey of Data Access Committee Members.Biopreservation and biobanking · 2024Article
- Article
- An ethical code for collecting, using and transferring sensitive health data: outcomes of a modified Policy Delphi process in Singapore.BMC medical ethics · 2023Article
- Data for sale: trust, confidence and sharing health data with commercial companies.Journal of medical ethics · 2023Article
- UPO Biobank: The Challenge of Integrating Biobanking into the Academic Environment to Support Translational Research.Journal of personalized medicine · 2023Article
- Setting up a Governance Framework for Secondary Use of Routine Health Data in Nursing Homes: Development Study Using Qualitative Interviews.Journal of medical Internet research · 2023Article
- Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations.International journal of population data science · 2023Article
- LGBTQ+ Perspectives on Conducting Genomic Research on Sexual Orientation and Gender Identity.Behavior genetics · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 2 institutions in 1 country.
Funding
Abstract
New models of data governance for health data are a focus of growing interest in an era of challenge to the social licence. In this article, we reflect on what the data trust model, which is founded on principles of participatory governance, can learn from experiences of involving and engagement of members of the public and participants in the governance of large-scale biobanks. We distinguish between upstream and ongoing governance models, showing how they require careful design and operation if they are to deliver on aspirations for deliberation and participation. Drawing on this learning, we identify a set of considerations important to future design for data trusts as they seek to ensure just, proportionate and fair governance. These considerations relate to the timing of involvement of participants, patterns of inclusion and exclusion, and responsiveness to stakeholder involvement and engagement. We emphasise that the evolution of governance models for data should be matched by a commitment to evaluation.
Indexed as
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What OpenQuestion holds
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.