Have We Asked Too Much of Consent?
Open accessAbstract
Paul Appelbaum and colleagues propose four models of informed consent to research that deploys whole genome sequencing and may generate incidental findings. They base their analysis on empirical data that suggests that research participants want to be offered incidental findings and on a normative consensus that researchers incur a duty to offer them. Their models will contribute to the heated policy debate about return of incidental findings. But in my view, they do not ask the foundational question, In the context of genome sequencing, how much work can consent be asked to do?
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Broad consent is commonly conceptualized as consent to governance.
“Broad consent is commonly conceptualized as consent to governance (82, 91), and studies of public opinion about broad consent are predicated on descriptions that involve entrusting decisions about specific studies to an ethics review board or other oversight body.”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [82]
In the main text (page unavailable), Koenig describes a model in which participants consent to a governance scheme rather than make specific upfront choices. The paper presents this as an emerging alternative for genomic research, not as a commonly held conceptualization of broad consent. (LLM, conf=0.85)
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The Mayo Clinic Biobank: A Building Block for Individualized Medicine
Olson, J. E., Ryu, E., Johnson, K. J., Koenig, B. A., Maschke, K. J., Morrisette, J. A., Liebow, M., Takahashi, P. Y., Fredericksen, Z. S., Sharma, R. G., et al. (2013) · Mayo Clinic Proceedings · doi:10.1016/j.mayocp.2013.06.006 · Cited by 212 · see citing works
Self-citationFrom consent to institutions: Designing adaptive governance for genomic biobanks
O’Doherty, K. C., Burgess, M., Edwards, K., Gallagher, R. P., Hawkins, A. K., Kaye, J. S., McCaffrey, V., & Winickoff, D. E. (2011) · Social Science & Medicine · doi:10.1016/j.socscimed.2011.05.046 · Cited by 156 · see citing works
Henderson, G. E. (2011) · The American Journal of the Medical Sciences · doi:10.1097/maj.0b013e31822a6c47 · Cited by 61 · see citing works
Fixing Research Subjects Protection in the United States: Moving Beyond Consent
Koenig, B. A. (2013) · Mayo Clinic Proceedings · doi:10.1016/j.mayocp.2013.03.010 · Cited by 7 · see citing works
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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 · see citing works
“Broad consent is commonly conceptualized as consent to governance (82, 91), and studies of public opinion about broad consent are predicated on descriptions that involve entrusting decisions about specific studies to an ethics review board or other oversight body.”
BackgroundSabatello, M., & Appelbaum, P. S. (2017) · Hastings Center Report · doi:10.1002/hast.736 · Cited by 79 · see citing works
- Authors
- Koenig, B. A.
- Affiliations
- University of California, San Francisco (US)
- Corresponding author
- Koenig, Barbara A.
- ORCID
- Koenig, Barbara A.
- Venue
- Hastings Center Report
- Publisher
- Wiley
- Published
- 2014-07
- Volume
- 44
- Issue
- 4
- Pages
- 33-34
- ISSN
- 0093-0334 (ISSN-L)
- PMC
- PMC4249719
- OpenAlex
- W2112290024
- Cited by
- 87
- References
- 4
- Citations by year
- 2026: 11 · 2025: 8 · 2024: 2 · 2023: 5 · 2022: 4 · 2021: 7 · 2020: 6 · 2019: 6 · 2018: 12 · 2017: 8 · 2016: 11 · 2015: 6 · 2014: 1
- FWCI
- 8.62
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- The Hastings Center Report (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (UL1TR000004, HD077627)
- National Human Genome Research Institute (P20HG007243)
- National Cancer Institute (R01CA154517)
- National Center for Advancing Translational Sciences
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (U19HD077627)
- 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 › Public Health, Environmental and Occupational Health › Medical and Health Sciences Research
- Keywords
- informed consent, incidental finding, whole genome sequencing, return of results, research ethics, duty to inform, participant preferences, consent models, genetic research
- MeSH terms
- Genetic Testing, Humans, Informed Consent, Truth Disclosure, United States, Genome, Human, Genomics, Incidental Findings, Biomedical Research
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