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Informed Consent in Genomics and Genetic Research
Open accessAbstract
There are several features of genetic and genomic research that challenge established norms of informed consent. In this paper, we discuss these challenges, explore specific elements of informed consent for genetic and genomic research conducted in the United States, and consider alternative consent models that have been proposed. All of these models attempt to balance the obligation to respect and protect research participants with the larger social interest in advancing beneficial research as quickly as possible.
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“The collection, storage, and research use of biospecimens and data, however, raise deep questions about informed consent, oversight, large-scale data sharing, privacy and confidentiality, commercialization, access to research results, and the ability to withdraw (94).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [94]
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Metadata
- Authors
- McGuire, A. L., & Beskow, L. M.
- Affiliations
- Baylor College of Medicine (US)
- Duke University (US)
- Venue
- Annual Review of Genomics and Human Genetics
- Publisher
- Annual Reviews
- Published
- 2010-09-01
- Volume
- 11
- Issue
- 1
- Pages
- 361-381
- ISSN
- 1527-8204 (ISSN-L)
- 1545-293X
- PMC
- PMC3216676
- OpenAlex
- W2129706078
- Cited by
- 204
- References
- 91
- Citations by year
- 2026: 8 · 2025: 10 · 2024: 12 · 2023: 11 · 2022: 19 · 2021: 13 · 2020: 16 · 2019: 14 · 2018: 12 · 2017: 12 · 2016: 17 · 2015: 17 · 2014: 16 · 2013: 10 · 2012: 11
- FWCI
- 1.25
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Annual Review of Genomics and Human Genetics (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Funders
- National Institutes of Health
- National Human Genome Research Institute (R01HG004333, R01HG004853)
- National Center for Research Resources (UL1RR024128)
- 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
- Social Sciences › Law › Medical and Health Sciences Research
- Keywords
- informed consent, genomic research, genetic research, research ethics, research participant protection, research participant autonomy
- MeSH terms
- Humans, Informed Consent, Specimen Handling, United States, Genetic Research
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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