Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
Open accessAbstract
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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The creation of ever more elaborate consent processes raises the specter of the tyranny of choice and legitimate questions about the claims for these models regarding increased autonomy, engagement, control, and reciprocity.
“Given the general limitations of informed consent, the creation of ever more elaborate processes raises the specter of what has been called “the tyranny of choice” (115), as well as legitimate questions about the claims for these models regarding increased autonomy, engagement, control, and reciprocity (133).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [133]
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“legitimate questions about the claims for these models regarding increased autonomy, engagement, control, and reciprocity (133).”
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- Authors
- Steinsbekk, K. S., Kåre Myskja, B., & Solberg, B.
- Affiliations
- Norwegian University of Science and Technology (NO)
- Corresponding author
- Steinsbekk, Kristin Solum
- ORCID
- Solberg, Berge
- Venue
- European Journal of Human Genetics
- Published
- 2013-01-09
- Volume
- 21
- Issue
- 9
- Pages
- 897-902
- ISSN
- 1018-4813 (ISSN-L)
- 1476-5438
- PMC
- PMC3746258
- OpenAlex
- W2060302414
- Cited by
- 320
- References
- 1
- Citations by year
- 2026: 21 · 2025: 16 · 2024: 27 · 2023: 31 · 2022: 24 · 2021: 40 · 2020: 18 · 2019: 29 · 2018: 18 · 2017: 25 · 2016: 21 · 2015: 21 · 2014: 22 · 2013: 7
- FWCI
- 24.20
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- cc-by-nc-nd
- www.springer.com/tdm (unspecified)
- Locations
- European Journal of Human Genetics (publishedVersion, cc-by-nc-nd)
- Europe PMC (PubMed Central) (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- Funders
- Norges Forskningsråd
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Health Sciences › Medicine › Physiology › Biomedical Ethics and Regulation
- Keywords
- broad consent, dynamic consent, passive participation, paternalism, autonomy, therapeutic misconception, informed consent, research ethics review, user participation
- MeSH terms
- Humans, Informed Consent, Biological Specimen Banks, Disclosure, Biomedical Research
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