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Should donors be allowed to give broad consent to future biobank research?
Abstract
Large international biobank studies can make substantial contributions to scientific research by validation of the biological importance of previous research and by identification of previously unknown causes of disease. However, regulations for patient consent that are too strict and discrepancies in national policies on informed consent might hinder progress. Therefore, establishment of common ground for ethical review of biobank research is essential. In this essay, broad consent is defined on a scale between strictly specified (eg, for a specific study) and blanket consent (ie, with no restrictions regarding the purpose of the research). Future research includes that which might not be planned or even conceptualised when consent is obtained. In conclusion, broad consent and consent for future research are valid ethically and should be recommended for biobank research provided that: personal information related to research is handled safely; donors of biological samples are granted the right to withdraw consent; and new research studies or changes to the legal or ethical authority of a biobank are approved by an ethics-review board.
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With regard to the collection of biospecimens specifically for research, the ethical acceptability of broad consent for future unspecified use has long been discussed, but surveys suggest that it is now common in the United States and possibly other countries.
“With regard to the collection of biospecimens specifically for research, the ethical acceptability of broad consent for future unspecified use has long been discussed (21, 52, 54, 61, 75, 109), but surveys suggest that it is now common in the United States (57) and possibly other countries (40, 109).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [52]
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Cited by
Sorted by citations
Informed Consent in Genomics and Genetic Research
McGuire, A. L., & Beskow, L. M. (2010) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-082509-141711 · Cited by 204
Lessons from HeLa Cells: The Ethics and Policy of Biospecimens
Beskow, L. M. (2016) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-083115-022536 · Cited by 146
“With regard to the collection of biospecimens specifically for research, the ethical acceptability of broad consent for future unspecified use has long been discussed (21, 52, 54, 61, 75, 109), but surveys suggest that it is now common in the United States (57) and possibly other countries (40, 109).”
BackgroundWatson, R. W. G., Kay, E. W., & Smith, D. (2010) · Nature Reviews Cancer · doi:10.1038/nrc2913 · Cited by 88
A trial of consent procedures for future research with clinically derived biological samples
Vermeulen, E., Schmidt, M. K., Aaronson, N. K., Kuenen, M., Baas-Vrancken Peeters, M.-J., van der Poel, H., Horenblas, S., Boot, H., Verwaal, V. J., Cats, A., et al. (2009) · British Journal of Cancer · doi:10.1038/sj.bjc.6605339 · Cited by 39
Alternative consent approaches for biobank research
Maschke, K. J. (2006) · The Lancet Oncology · doi:10.1016/s1470-2045(06)70590-3 · Cited by 38
Metadata
- Authors
- Hansson, M. G., Dillner, J., Bartram, C. R., Carlson, J. A., & Helgesson, G.
- Affiliations
- Uppsala University (SE)
- Lund University (SE)
- Heidelberg University (DE)
- Skåne University Hospital (SE)
- Corresponding author
- Hansson, Mats G
- Venue
- The Lancet Oncology
- Publisher
- Elsevier BV
- Published
- 2006-03
- Volume
- 7
- Issue
- 3
- Pages
- 266-269
- ISSN
- 1470-2045 (ISSN-L)
- OpenAlex
- W2129745353
- Cited by
- 382
- References
- 0
- Citations by year
- 2026: 10 · 2025: 4 · 2024: 9 · 2023: 9 · 2022: 12 · 2021: 14 · 2020: 18 · 2019: 17 · 2018: 10 · 2017: 17 · 2016: 19 · 2015: 25 · 2014: 26 · 2013: 28 · 2012: 33
- FWCI
- 20.50
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- The Lancet Oncology (publishedVersion)
- PubMed (publishedVersion)
- Lund University Publications (Lund University) (submittedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- 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 › Nursing › Issues, ethics and legal aspects › Biomedical Ethics and Regulation
- Keywords
- broad consent, informed consent, biobanks, future research, research ethics, ethical review, donor rights, withdrawal of consent, personal data protection
- MeSH terms
- Confidentiality, Ethics, Medical, Humans, Informed Consent, Research, Tissue Banks, Tissue Donors, Genetic Predisposition to Disease
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