ArticlePublic health ethics2019
Authority and the Future of Consent in Population-Level Biomedical Research.
Article in Public health ethics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 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
21 citing papers in PubMed.
- Not all information is equally important: informed consent to genetic testing for hereditary cancer.Journal of cancer research and clinical oncology · 2026Article
- The research relationship: participant perspectives on consent in biobanking.BMC medical ethics · 2025Article
- Participant Contributions to Person-Generated Health Data Research Using Mobile Devices: Scoping Review.Journal of medical Internet research · 2025Article
- Article
- [Nationally standardized broad consent in practice: initial experiences, current developments, and critical assessment].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2024Article
- Who owns (or controls) health data?Scientific data · 2024Article
- Evaluation of CTRL: a web application for dynamic consent and engagement with individuals involved in a cardiovascular genetic disorders cohort.European journal of human genetics : EJHG · 2024Article
- Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process.European journal of human genetics : EJHG · 2022Article
- Better governance starts with better words: why responsible human tissue research demands a change of language.BMC medical ethics · 2022Article
- Building an Opt-Out Model for Service-Level Consent in the Context of New Data Regulations.Public health ethics · 2022Article
- Dynamic consent and personalised medicine.The Medical journal of Australia · 2022Article
- The ethical challenges of artificial intelligence-driven digital pathology.The journal of pathology. Clinical research · 2022Review
- A concentric circles view of health data relations facilitates understanding of sociotechnical challenges for learning health systems and the role of federated data networks.Frontiers in big data · 2022Article
- Routinely collected data and patient-centred research in anaesthesia and peri-operative care: a narrative review.Anaesthesia · 2021Review
- Multicomponent Informed Consent with Marshallese Participants.Journal of empirical research on human research ethics : JERHRE · 2021Article
- Ethics review of big data research: What should stay and what should be reformed?BMC medical ethics · 2021Review
- 'CTRL': an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research.European journal of human genetics : EJHG · 2021Article
- Reflections on dynamic consent in biomedical research: the story so far.European journal of human genetics : EJHG · 2021Article
- Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Science and engineering ethics · 2021Article
- Making consent for electronic health and social care data research fit for purpose in the 21st century.BMJ health & care informatics · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Population-level biomedical research has become crucial to the health system's ability to improve the health of the population. This form of research raises a number of well-documented ethical concerns, perhaps the most significant of which is the inability of the researcher to obtain fully informed specific consent from participants. Two proposed technical solutions to this problem of consent in large-scale biomedical research that have become increasingly popular are meta-consent and dynamic consent. We critically examine the ethical and practical credentials of these proposals and find them lacking. We suggest that the consent problem is not solved by adopting a technology driven approach grounded in a notion of 'specific' consent but by taking seriously the role of research governance in combination with broader conceptions of consent. In our view, these approaches misconstrue the rightful location of authority in the way in which population-level biomedical research activities are structured and organized. We conclude by showing how and why the authority for determining the nature and shape of choice making about participation ought not to lie with individual participants, but rather with the researchers and the research governance process, and that this necessarily leads to the endorsement of a fully articulated broad consent approach.
Identifiers
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.