ArticleMedicine, health care, and philosophy2022
Evaluating models of consent in changing health research environments.
Article in Medicine, health care, and philosophy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 1 of them a synthesis 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
35 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Exploring perspectives of interest-holders on the use of health and genomic data from deceased participants in research: An updated systematic review.Journal of genetic counseling · 2026Pooled it
- Ethical Governance of Open Data Across Biomedical Research, Healthcare, and Public Health: Privacy, Equity, Trust, and Controlled Access.Health care analysis : HCA : journal of health philosophy and policy · 2026Article
- Beyond consent: Reconstructing ethical justification in medical adaptive machine learning systems.Global health & medicine · 2026Review
- Analysis of compliance and language use in broad informed consent forms in international multicenter clinical trials after the implementation of the 2018 common rule.BMC medical ethics · 2026Article
- Public attitudes towards consent for the donation of surplus frozen eggs to research.Human reproduction (Oxford, England) · 2026Article
- Embedding ethics into Genomics England's Generation Study.BMJ open · 2026Review
- Student voices: synergising artificial and human intelligence in health science education.BMC medical education · 2026Article
- When genomics companies act as biobanks: governance challenges in an era of genomic assetization.Frontiers in genetics · 2026Article
- Community and bioethicists' perspectives on iPSC research with biobanked samples collected using broad consent.Stem cell reports · 2025Review
- Developing a Data Trust Model (Not Only) for Sleep Research: Conceptual Study and Quantitative Survey.JMIR human factors · 2025Article
- Critical consideration towards broad consent by patient experts: results of a semi-structured interview study on the secondary use of medical data.BMC medical ethics · 2025Article
- Characteristics of Participants Who Consented to Share Data with a Public Health Registry After an Environmental Disaster.International journal of environmental research and public health · 2025Article
- Six solutions for clinical study data sharing in Germany.BMC medical research methodology · 2025Article
- Era of surrogate endpoints and accelerated approvals: a comprehensive review on applicability, uncertainties, and challenges from regulatory, payer, and patient perspectives.European journal of clinical pharmacology · 2025Review
- Patient data for commercial companies? An ethical framework for sharing patients' data with for-profit companies for research.Journal of medical ethics · 2025Article
- Perspectives on Using Artificial Intelligence to Derive Social Determinants of Health Data From Medical Records in Canada: Large Multijurisdictional Qualitative Study.Journal of medical Internet research · 2025Article
- Participant Contributions to Person-Generated Health Data Research Using Mobile Devices: Scoping Review.Journal of medical Internet research · 2025Article
- An assessment of synthetic data generation, use and disclosure under Canadian privacy regulations.AI and ethics · 2025Article
- Building trust in clinical research: a systems approach to ethical engagement and sustainable outcomes.Frontiers in pharmacology · 2025Article
- The European Health Data Space: an opportunity to strengthen citizen rights and engage citizens in health data governance.Frontiers in medicine · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
While Specific Informed Consent has been the established standard for obtaining consent for medical research for many years, it does not appear suitable for large-scale biobank and health data research. Thus, alternative forms of consent have been suggested, based on a variety of ethical background assumptions. This article identifies five main ethical perspectives at stake. Even though Tiered Consent, Dynamic Consent and Meta Consent are designed to the demands of the self-determination perspective as well as the perspective of research as a public good, they are still also criticized from both perspectives. In addition, criticisms based on concerns of justice, participation and democratic deliberation, and relational concerns have been levelled at each of the models. As all of these perspectives have valid points to make, the task at hand lies in balancing these ethical perspectives. What constitutes an adequate balancing depends on contextual factors. These factors include digital infrastructure and digital literacy, data safety regulation, good scientific and clinical practice, transparent debates on ethically relevant features of research, social inequalities, anti-discrimination laws and practices, trust in health care institutions and recognition of patient preferences, and consensus on unethical research. We argue that the role of context in determining acceptable models of consent puts the ethical importance of models of consent into perspective. Since altering contextual factors can help to live up to the ethical concerns at stake in debates about models of consent, opting for such a shift of focus comes without ethical loss.
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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.