ReviewBMC medical ethics2021
Ethics review of big data research: What should stay and what should be reformed?
Review in BMC medical ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 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
38 citing papers in PubMed.
- Dissolution of Continuity of Ethical Governance in Data Science Health Research: Diagnostic and Response Framework for Lifecycle Oversight.Journal of medical Internet research · 2026Article
- Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care.European journal of human genetics : EJHG · 2026Article
- The Challenges of Web Scraping and AI for Research Ethics in Canada: A Survey of University REBs.Journal of empirical research on human research ethics : JERHRE · 2026Article
- Research Ethics Committees (RECs) perspectives on large language models and AI ethics review: a South African case.BMC medical ethics · 2026Article
- Unlocking Health Data for Research: Legal, Technical, and Organisational Lessons from a Belgian Interdisciplinary Case Study.Journal of healthcare informatics research · 2026Article
- Rethinking ethical reflexivity and oversight in health research through an ecosystem approach: A workshop report.Research ethics · 2026Article
- Does the emotional burden of participating in trauma-related surveys discourage future participation? A population-based study.European journal of psychotraumatology · 2025Article
- Ethics review or compliance check? an empirical analysis of 6740 requests for information in Belgian clinical trial evaluations (2017-2024).BMC medical ethics · 2025Article
- Understanding and processing informed consent during data-intensive health research in sub-Saharan Africa: challenges and opportunities from a multilingual perspective.Research ethics · 2025Article
- Perspectives of Research Ethics Committees on the Challenges of Human Genomic Research Participation in Ethiopia.Journal of empirical research on human research ethics : JERHRE · 2025Article
- Research on artificial intelligence, machine and deep learning in medicine: global characteristics, readiness, and equity.Globalization and health · 2025Article
- Training Bioethics Professionals in AI Ethics: A Framework.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2025Article
- Realizing the promise of machine learning in precision oncology: expert perspectives on opportunities and challenges.BMC cancer · 2025Article
- Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?The American journal of bioethics : AJOB · 2025Article
- Refining Established Practices for Research Question Definition to Foster Interdisciplinary Research Skills in a Digital Age: Consensus Study With Nominal Group Technique.JMIR medical education · 2025Article
- Sharing data matters: exploring the attitudes of older consumers on an emerging healthy ageing data platform using electronic health records for research.BMJ health & care informatics · 2025Article
- Community engagement for artificial intelligence health research in Africa.Wellcome open research · 2025Review
- Data sharing ethics toolkit: The Human Cell Atlas.Nature communications · 2024Review
- Clinical Research Informatics: a Decade-in-Review.Yearbook of medical informatics · 2024Review
- Reporting of Ethical Considerations in Qualitative Research Utilizing Social Media Data on Public Health Care: Scoping Review.Journal of medical Internet research · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
16 authors.
Funding
Abstract
backgroundEthics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts. MAIN TEXT: In this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC's scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC's way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science.
conclusionsWe believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large.
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.