ArticleEuropean journal of human genetics : EJHG2021
Reflections on dynamic consent in biomedical research: the story so far.
Article in European journal of human genetics : EJHG, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 52 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
52 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review.Journal of medical Internet research · 2023Pooled it
- Towards a Design Toolkit of Informed Consent Models Across Fields: A Systematic Review.Science and engineering ethics · 2022Pooled it
- Expanding the boundaries of previously obtained informed consent in research: Views from participants in the Personalised Risk-based Mammascreening study.Health expectations : an international journal of public participation in health care and health policy · 2023Trial
- Review
- [Artificial intelligence and cardiovascular biobanks: Shared technological promise and ethical responsibility].Revista medica del Instituto Mexicano del Seguro Social · 2026Article
- Future-use consent and human virome research: ethical challenges.Journal of virology · 2026Review
- Lessons Learned in Clinical Trial Recruitment: A Partnership Between a Genomic Research Study and the Discover Together Biobank.Biopreservation and biobanking · 2026Review
- 'A No-Brainer, but Not a Simple Decision': A Qualitative Study of Patient Experiences of Tissue Donation for Research in Rare Craniospinal Tumour Pathways.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Transcending genome-wide association studies to create useful multi-omic views of glaucoma.Progress in retinal and eye research · 2026Review
- Bridging the Governance Gap: A Case for an Indigenous Jurisprudential Framework for Genomic and Biobanking Research in Nigeria.Journal of bioethical inquiry · 2026Article
- Review
- Biomedical research in Alzheimer's disease in a Latin American developing country: challenges in the informed consent process.Brain communications · 2026Review
- When genomics companies act as biobanks: governance challenges in an era of genomic assetization.Frontiers in genetics · 2026Article
- Ethical considerations for multimodal artificial intelligence in healthcare.AI and ethics · 2026Article
- Epigenetic Alterations Induced by Smoking and Their Intersection with Artificial Intelligence: A Narrative Review.International journal of environmental research and public health · 2025Review
- 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
- The Ethics of Decentralized Clinical Trials and Informed Consent: Taking Technologies' Soft Impacts into Account.Health care analysis : HCA : journal of health philosophy and policy · 2025Article
- On the ethical governance of swarm robotic systems in the real world.Philosophical transactions. Series A, Mathematical, physical, and engineering sciences · 2025Article
- Japanese attitudes toward cell donation in human brain organoid research: many oppose broad consent.Frontiers in genetics · 2025Article
- How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.Journal of community genetics · 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
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Dynamic consent (DC) was originally developed in response to challenges to the informed consent process presented by participants agreeing to 'future research' in biobanking. In the past 12 years, it has been trialled in a number of different projects, and examined as a new approach for consent and to support patient engagement over time. There have been significant societal shifts during this time, namely in our reliance on digital tools and the use of social media, as well as a greater appreciation of the integral role of patients in biomedical research. This paper reflects on the development of DC to understand its importance in an age where digital health is becoming the norm and patients require greater oversight and control of how their data may be used in a range of settings. As well as looking back, it looks forwards to consider how DC could be further utilised to enhance the patient experience and address some of the inequalities caused by the digital divide in society.
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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.