The DOI matches its Crossref record.
Informed Consent for Genetic Research on Stored Tissue Samples
Abstract
OBJECTIVE: To develop recommendations for obtaining adequate informed consent in the future when gathering tissue samples that may be used for genetic studies and defining the circumstances under which it is necessary to obtain further consent if tissue samples already in hand are to be used for such research. PARTICIPANTS: Scientists, ethicists, lawyers, and consumers selected by the National Center for Human Genome Research and the Centers for Disease Control and Prevention to represent a wide array of opinions. EVIDENCE: Statutes, regulations, and cases and articles on law and ethics. CONSENSUS PROCESS: Initial workshop, followed by circulation of several drafts of this document with opportunities for comment by workshop participants and others as well as smaller meetings involving participants with widely differing views. CONCLUSION: Genetic research using stored tissue samples poses an array of benefits and risks to individuals, researchers, and society. As a result, the workshop participants conclude that (1) informed consent is required for all genetic research using linkable samples unless conditions for limitation or waiver are met; (2) informed consent is not required for genetic research using anonymous samples but may be considered if identifiers are to be removed from currently linkable samples; (3) institutional review boards could usefully review all protocols that propose to use samples for genetic research; and (4) further work regarding these issues is warranted.
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.
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
Cited by
Robson, M. E., Bradbury, A. R., Arun, B., Domchek, S. M., Ford, J. M., Hampel, H. L., Lipkin, S. M., Syngal, S., Wollins, D. S., & Lindor, N. M. (2015) · Journal of Clinical Oncology · doi:10.1200/jco.2015.63.0996 · Cited by 934
Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations
Wolf, S. M., Lawrenz, F. P., Nelson, C. A., Kahn, J. P., Cho, M. K., Clayton, E. W., Fletcher, J. G., Georgieff, M. K., Hammerschmidt, D., Hudson, K., et al. (2008) · Journal of Law, Medicine & Ethics · doi:10.1111/j.1748-720x.2008.00266.x · Cited by 706
Self-citationInformed Consent for Population-Based Research Involving Genetics
Beskow, L. M. (2001) · JAMA · doi:10.1001/jama.286.18.2315 · Cited by 272
Cheung, V. G., & Nelson, S. F. (1996) · Proceedings of the National Academy of Sciences · doi:10.1073/pnas.93.25.14676 · Cited by 269
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
Metadata
- Authors
- Clayton, E. W.
- Venue
- JAMA: The Journal of the American Medical Association
- Publisher
- American Medical Association (AMA)
- Published
- 1995-12-13
- Volume
- 274
- Issue
- 22
- Pages
- 1786
- ISSN
- 0002-9955 (ISSN-L)
- 0098-7484
- OpenAlex
- W2057135522
- Cited by
- 283
- References
- 0
- FWCI
- 32.01
- Type
- journal article
- Language
- en
- Open access
- closed
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
How to cite
Cite CoChat for the checks on this page, and the paper for its own findings.
- This page
- CoChat. (2026). Citation check: Informed Consent for Genetic Research on Stored Tissue Samples. https://app.cochat.ai/papers/10.1001/jama.1995.03530220052033
- The paper
- Clayton, E. W. (1995). Informed Consent for Genetic Research on Stored Tissue Samples. JAMA: The Journal of the American Medical Association. https://doi.org/10.1001/jama.1995.03530220052033
Data sources
Bibliographic data: Semantic Scholar, OpenAlex, Crossref.
Contains information from the Semantic Scholar Academic Graph Datasets, made available under the ODC Attribution License (ODC-BY 1.0).
Semantic Scholar’s data is described in: Kinney, R., et al. (2023). The Semantic Scholar Open Data Platform. arXiv:2301.10140.
