The DOI matches its Crossref record; 89 of the 91 references it cites were found in a registry or an index.
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.
Overview
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Verification
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The cited source says what the claim attributes to it.
In the citing paper
“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]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Citations
Cites
Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls
The Wellcome Trust Case Control Consortium, Management Committee, Burton, P. R., Clayton, D. G., Cardon, L. R., Craddock, N., Deloukas, P., Duncanson, A., Kwiatkowski, D. P., McCarthy, M. I., et al. (2007) · Nature · doi:10.1038/nature05911 · Cited by 9,442
dbSNP: the NCBI database of genetic variation
Sherry, S. T. (2001) · Nucleic Acids Research · doi:10.1093/nar/29.1.308 · Cited by 7,502
Eckstein, S. (2003) · Cambridge University Press eBooks · doi:10.1017/cbo9780511550089.028 · Cited by 3,514
The Wellcome Trust Case Control Consortium, U.K.
Mossman, K. (2008) · Scientific American · doi:10.1038/scientificamerican0108-42a · Cited by 2,714
Declaration of Helsinki. Ethical Principles for Medical Research Involving Human Subjects
(2014) · Jahrbuch für Wissenschaft und Ethik · doi:10.1515/jwiet-2014-0117 · Cited by 2,483
Homer, N., Szelinger, S., Redman, M., Duggan, D., Tembe, W., Muehling, J., Pearson, J. V., Stephan, D. A., Nelson, S. F., & Craig, D. W. (2008) · PLoS Genetics · doi:10.1371/journal.pgen.1000167 · Cited by 1,221
Development of a Large-Scale De-Identified DNA Biobank to Enable Personalized Medicine
Roden, D. M., Pulley, J. M., Basford, M., Bernard, G. R., Clayton, E. W., Balser, J., & Masys, D. R. (2008) · Clinical Pharmacology & Therapeutics · doi:10.1038/clpt.2008.89 · Cited by 966
the eMERGE Team, McCarty, C. A., Chisholm, R. L., Chute, C. G., Kullo, I. J., Jarvik, G. P., Larson, E. B., Li, R., Masys, D. R., Ritchie, M. D., et al. (2011) · BMC Medical Genomics · doi:10.1186/1755-8794-4-13 · Cited by 701
The impact of presumed consent legislation on cadaveric organ donation: A cross-country study
Abadie, A., & Gay, S. (2006) · Journal of Health Economics · doi:10.1016/j.jhealeco.2006.01.003 · Cited by 526
Quality of Informed Consent: a New Measure of Understanding Among Research Subjects
Joffe, S., Cook, E. F., Cleary, P. D., Clark, J. W., & Weeks, J. C. (2001) · JNCI Journal of the National Cancer Institute · doi:10.1093/jnci/93.2.139 · Cited by 411
Flagged first, then by citations
2 of the 91 references couldn’t be matched to a known paper.
Research works printed but not linked: 10
- American Society of Human Genetics, 1996, Am. J. Hum. Genet., 59, 471
- 10.1001/jama.274.22.1786 · DOI
- 40. Freedom of Information Act, PL No. 89–554, 80 Stat. 383. Amended 1996, 2002, 2007
- National Bioethics Advisory Commission (NBAC), 1999, Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, 1
- Northwestern University, Consent Form and Authorization for Research
- Off. Hum. Res. Protection, 2004, Guidance on Research Involving Coded Private Information or Biological Specimens
- Off. Hum. Res. Protection, 2008, Guidance on Engagement of Institutions in Human Subjects Research
- Parker LS, 2006, Am. Soc. Bioeth. Humanit. Exch., 9, 6
- Roden DM, 2008, Nature, 84, 362
- Wendler D, 2002, Arch. Intern. Med., 98, 336
Cited by
Sorted by citations
Nishimura, A., Carey, J., Erwin, P. J., Tilburt, J. C., Murad, M. H., & McCormick, J. B. (2013) · BMC Medical Ethics · doi:10.1186/1472-6939-14-28 · Cited by 521
Solidarity: Reflections on an emerging concept in bioethics
Prainsack, B., & Buyx, A. (2011) · Research Portal (King's College London) · Cited by 217
Characterizing biobank organizations in the U.S.: results from a national survey
Henderson, G. E., Cadigan, R. J., Edwards, T. P., Conlon, I., Nelson, A. G., Evans, J. P., Davis, A. M., Zimmer, C., & Weiner, B. J. (2013) · Genome Medicine · doi:10.1186/gm407 · Cited by 198
Health Research with Big Data: Time for Systemic Oversight
Vayena, E., & Blasimme, A. (2018) · The Journal of Law Medicine & Ethics · doi:10.1177/1073110518766026 · Cited by 191
From 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 159
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 ›
Are you an author, or do you see a problem with this page? Request a review
