ArticleJournal of medical ethics2018
Consent and the ethical duty to participate in health data research.
Article in Journal of medical ethics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 2 of them syntheses that pooled it.
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
22 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- When is it impractical to ask informed consent? A systematic review.Clinical trials (London, England) · 2022Pooled it
- Ethical Principles, Constraints and Opportunities in Clinical Proteomics.Molecular & cellular proteomics : MCP · 2021Pooled it
- Trial
- Patient views on research use of clinical data without consent: Legal, but also acceptable?European journal of human genetics : EJHG · 2019Trial
- Social inequalities in cancer in Germany: a call to action.Journal of cancer research and clinical oncology · 2026Review
- The Emerging Role of Olfactory Receptors: From Genomics to Precision Medicine.Molecular diagnosis & therapy · 2026Review
- Genetic research and the collective good: participants as leaders to reconcile individual and public interests.Journal of medical ethics · 2025Article
- Patient data for commercial companies? An ethical framework for sharing patients' data with for-profit companies for research.Journal of medical ethics · 2025Article
- Building trust in clinical research: a systems approach to ethical engagement and sustainable outcomes.Frontiers in pharmacology · 2025Article
- Ethical and social reflections on the proposed European Health Data Space.European journal of human genetics : EJHG · 2024Article
- Towards trust-based governance of health data research.Medicine, health care, and philosophy · 2023Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Is there a civic duty to support medical AI development by sharing electronic health records?BMC medical ethics · 2022Article
- Challenges and opportunities for artificial intelligence in oncological imaging.Clinical radiology · 2021Review
- Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Science and engineering ethics · 2021Article
- Deep learning workflow in radiology: a primer.Insights into imaging · 2020Review
- Rethinking the ethical principles of genomic medicine services.European journal of human genetics : EJHG · 2020Article
- Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine.Journal of medical ethics · 2019Article
- Ethical Considerations for Movement Mapping to Identify Disease Transmission Hotspots.Emerging infectious diseases · 2019Article
- In response to Ballantyne and Schaefer's 'Consent and the ethical duty to participate in health data research'.Journal of medical ethics · 2019Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency.
Indexed as
Identifiers
29358219What 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.