ArticleEuropean journal of human genetics : EJHG2013
Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem?
Article in European journal of human genetics : EJHG, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 122 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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Who cites it
122 citing papers in PubMed, 1 synthesis or guideline pooled 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
- Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.American journal of human genetics · 2017Trial
- Paediatric biobanking in the era of precision medicine: ethical, regulatory, and scientific challenges from childhood to adulthood.European journal of pediatrics · 2026Review
- Towards a regional and national cardiothoracic biobank in India: translating a Dutch model to address a poorly characterised disease burden.The Lancet regional health. Southeast Asia · 2026Review
- When does broad consent expire? A temporal validity framework for biobank samples in induced pluripotent stem cell research.Research square · 2026Article
- Individuals' preferences for future biological sample and genomic data sharing in the Australian Reproductive Genetic Carrier Screening Project.European journal of human genetics : EJHG · 2026Article
- Beyond consent: Reconstructing ethical justification in medical adaptive machine learning systems.Global health & medicine · 2026Review
- Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research.SSM. Qualitative research in health · 2026Article
- Public attitudes towards consent for the donation of surplus frozen eggs to research.Human reproduction (Oxford, England) · 2026Article
- Biobank consent preferences and implications for a mixed consent model: biomedical researchers vs. community stakeholders in a semi-urban Yoruba community, Nigeria.Frontiers in genetics · 2026Article
- "It is important to me to know where the information is going": Views of adults with intellectual disability on data sharing in precision medicine research.Genetics in medicine open · 2026Article
- 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
- [Clinical research and medical ethics in the era of artificial intelligence].Zhonghua gan zang bing za zhi = Zhonghua ganzangbing zazhi = Chinese journal of hepatology · 2025Article
- Enabling secure and self determined health data sharing and consent management.NPJ digital medicine · 2025Review
- Article
- The research relationship: participant perspectives on consent in biobanking.BMC medical ethics · 2025Article
- Enabling Demonstrated Consent for Biobanking with Blockchain and Generative AI.The American journal of bioethics : AJOB · 2025Article
- From blueprint to biobank: Leveraging expert recommendations for implementing change (ERIC) to pediatric cancer biobanking in Pakistan.PloS one · 2025Article
62 more citing papers are in PubMed but not listed here.
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
In the endeavour of biobank research there is dispute concerning what type of consent and which form of donor-biobank relationship meet high ethical standards. Up until now, a 'broad consent' model has been used in many present-day biobank projects. However it has been, by some scholars, deemed as a pragmatic, and not an acceptable ethical solution. Calls for change have been made on the basis of avoidance of paternalism, intentions to fulfil the principle of autonomy, wish for increased user participation, a questioning of the role of experts and ideas advocating reduction of top-down governance. Recently, an approach termed 'dynamic consent' has been proposed to meet such challenges. Dynamic consent uses modern communication strategies to inform, involve, offer choices and last but not the least obtain consent for every research projects based on biobank resources. At first glance dynamic consent seems appealing, and we have identified six claims of superiority of this model; claims pertaining to autonomy, information, increased engagement, control, social robustness and reciprocity. However, after closer examination, there seems to be several weaknesses with a dynamic consent approach; among others the risk of inviting people into the therapeutic misconception as well as individualizing the ethical review of research projects. When comparing the two models, broad consent still holds and can be deemed a good ethical solution for longitudinal biobank research. Nevertheless, there is potential for improvement in the broad model, and criticism can be met by adapting some of the modern communication strategies proposed in the dynamic consent approach.
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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.