The DOI matches its Crossref record; 28 of the 29 references it cites were found in a registry or an index.
“I don’t want to be Henrietta Lacks”: diverse patient perspectives on donating biospecimens for precision medicine research
Open accessAbstract
Purpose To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections. Methods We conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian, and non-Hispanic white on the collection of biospecimens and EHR data for research. Results Our study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data. Conclusion Considering that the potential misuse of EHR data is as great as, if not greater than, for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives, and misconceptions about sources of patient information to build trust in research relationships.
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 source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
In the citing paper
“Although there is generally a high willingness among patients to donate data and biospecimens for precision medicine research, one study also suggests that patients expect a corresponding countervalue when pharmaceutical companies earn large sums of money from drug development that was made possible by patients' donations.”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [115]
Experimental — accuracy not yet measuredThe cited source says what the claim attributes to it.
In the citing paper
“Some participants would like to have separate consent for biospecimens and EHR data, as they see a risk for misuse of DNA in future research [115].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [115]
The cited source says what the claim attributes to it.
In the citing paper
“Some participants in the study argued that if biospecimens contributes to corporate profit, patients should be compensated [98, 115].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [115]
The cited source says what the claim attributes to it.
In the citing paper
“Nevertheless, some people would like to be compensated for their donation if pharmaceutical companies gain a high profit with it [98, 115].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [115]
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
Ryan, G. W., & Bernard, H. R. (2003) · Field Methods · doi:10.1177/1525822x02239569 · Cited by 5,475
The cultural biography of things: commoditization as process
Kopytoff, I. (1986) · The Social Life of Things · doi:10.1017/cbo9780511819582.004 · Cited by 4,867
Mattley, C. L., Strauss, A., & Corbin, J. M. (1999) · Contemporary Sociology A Journal of Reviews · doi:10.2307/2655359 · Cited by 2,412
George, S., Duran, N., & Norris, K. (2014) · American Journal of Public Health · doi:10.2105/ajph.2013.301706 · Cited by 1,603
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
Martins, J. T., Nunes, M. B., Alajamy, M., & Zhou, L. (2013) · IGI Global eBooks · doi:10.4018/978-1-4666-2491-7.ch008 · Cited by 1,190
Getting the Focus and the Group: Enhancing Analytical Rigor in Focus Group Research
Kidd, P. S., & Parshall, M. B. (2000) · Qualitative Health Research · doi:10.1177/104973200129118453 · Cited by 1,056
Federal Policy for the Protection of Human Subjects
Grigsby, R. K., & Roof, H. L. (1993) · Research on Social Work Practice · doi:10.1177/104973159300300406 · Cited by 362
The Havasupai Indian tribe case--lessons for research involving stored biologic samples.
Mello, M. M., & Wolf, L. (2010) · New England Journal of Medicine · doi:10.1056/nejmp1005203 · Cited by 348
Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research
Garrison, N. A. (2013) · Science, Technology, & Human Values · doi:10.1177/0162243912470009 · Cited by 309
Cited by
Sorted by citations
Items 101–128 of 128
Evans, J. H. (2024) · doi:10.1093/oso/9780197750704.003.0006
Evans, J. H. (2024) · doi:10.1093/oso/9780197750704.005.0001
The Public’s View of Human-Brain Organoids and Neuro-Chimeric Animals
Evans, J. H., III (2024) · doi:10.1093/oso/9780197750704.003.0003
What We Know about the Public’s Views of Humans
Evans, J. H. (2024) · doi:10.1093/oso/9780197750704.003.0002
Evans, J. H. (2024) · doi:10.1093/oso/9780197750704.002.0003
The patient perspective on big data and its use in clinical care
Tai, K., Babu, C., Kim, Y. E., Subramanian, T., & Rameau, A. (2024) · Elsevier eBooks · doi:10.1016/b978-0-443-10520-3.00004-6
Brisbane, J. M., Queen, R. M., McCullough, M. B. A., Baker, C., & London, J. (2024) · Translational Journal of the American College of Sports Medicine · doi:10.1249/tjx.0000000000000277
Identifying High-Priority Ethical Challenges for Precision Emergency Medicine: Nominal Group Study
Rose, C. C., Shearer, E. J., Woller, I. A., Foster, A. A., Ashenburg, N. G., Kim, I., & Newberry, J. A. (2025) · JMIR Formative Research · doi:10.2196/68371 · Cited by 1
Patient perspectives in clinical research
Corrigan, M. (2025) · Elsevier eBooks · doi:10.1016/b978-0-12-821426-8.00019-4
Innovative Consultancy Promoting Older African American Perspectives
Stringer, W., Evans, B., Perry, T. E., Rorai, V., Swift, H., Samaroo, R., Spears, F., Smith, J., Bridgforth, J., Mitchell, J. A., et al. (2025) · Human Services Organizations Management Leadership & Governance · doi:10.1080/23303131.2025.2541619
Navigating ethical problems of commercialization: towards inclusive organoid research
van Daal, M., & Jongsma, K. R. (2025) · Personalized Medicine · doi:10.1080/17410541.2025.2564622
Challenges and limitations of theranostics in Precision oncology
Anitha, K., Reddy, B. K., Sharma, M., Sangolli, R. R., Mule, S., & Gorubala, H. K. (2025) · Elsevier eBooks · doi:10.1016/b978-0-443-34199-1.00007-7
Kraft, S. A., Duenas, D. M., & Shah, S. K. (2023) · Figshare · doi:10.6084/m9.figshare.24180957
Self-citationNeilan, A. M., Tyagi, A., Tong, Y., Farkas, E. J., Burns, M. D., Fialkowski, A., Park, G., Hardcastle, M., Gootkind, E., Bassett, I. V., et al. (2022) · Figshare · doi:10.6084/m9.figshare.19351056
Roybal, K. L., Nava‐Coulter, B., Roberts, J., Harden, D., Castro, S., Revette, A. C., Connolly, M., Johnson, G., Rountree, J. A., Brodney, S., et al. (2026) · Journal of Community Genetics · doi:10.1007/s12687-025-00855-7
The effects of the chemical relaxer lye on hair cortisol concentrations
Burnett, C. L., Crandall, K., Osbourn, D. M., & Buchanan, T. W. (2026) · Psychoneuroendocrinology · doi:10.1016/j.psyneuen.2026.107750
Enhancing engagement in biobanking research among Black women with endometrial cancer
Salehipour, D., Tadess, B., Moore, A., Jones, T., Oluloro, A., Johnson, W. Y., Drummond, T., Richardson, K., Siders, S., Perez, D. B., et al. (2026) · Gynecologic Oncology · doi:10.1016/j.ygyno.2026.03.001
Weaver, M. S., Shurley, T., Bartholomew, E. T., Mandrell, B. N., Williams, A., & Johnson, L. (2026) · Pediatric Blood & Cancer · doi:10.1002/1545-5017.70242
Artificial intelligence and antiaging research
Arumugam, S., Muthuvel, R., Antony, B. S., Chandrasekaran, K., & Subbaraj, G. K. (2026) · Elsevier eBooks · doi:10.1016/b978-0-443-33159-6.00009-6
A Crisis of Consent? Police Surgeons, Rape and HIV/AIDS in Late Twentieth-Century Britain
Severs, G. J. (2026) · Genders and sexualities in history · doi:10.1007/978-3-032-10800-5_11
Ethical Issues on the Secondary Use of Human Biological Samples: A Scoping Review
Landicho, J., Teo, C. H., & Gopalan, N. (2026) · Journal of Empirical Research on Human Research Ethics · doi:10.1177/15562646261452718
Peglow, K., Aguirre, A. N., Eitenberger, M., Lee, S. S., Callier, S., Spicer, P., Rosenblum, H. A., & Sabatello, M. (2026) · Human Genetics and Genomics Advances · doi:10.1016/j.xhgg.2026.100661
Self-citationPrivacy-preserving pangenome graphs
Blindenbach, J., Soni, S., & Gürsoy, G. (2026) · Nature Communications · doi:10.1038/s41467-026-77591-0 · Cited by 1
Martin, D., Abbasi, A., Fadhil, R. A. S., Forsythe, J. L. R., Dorze, M. L., Locke, J. E., Muller, E., Oniscu, G. C., Opdam, H. I., Rockell, K., et al. (2026) · Transplant International · doi:10.3389/ti.2026.17151
Metadata
- Authors
- Lee, S. S.-J., Cho, M. K., Kraft, S. A., Varsava, N., Gillespie, K., Ormond, K. E., Wilfond, B. S., & Magnus, D.
- Affiliations
- Stanford Medicine (US)
- Seattle Children's Hospital (US)
- Palo Alto Medical Foundation (US)
- Corresponding author
- Lee, Sandra S.-J.
- ORCID
- Venue
- Genetics in Medicine
- Publisher
- Elsevier BV
- Published
- 2019-01
- Volume
- 21
- Issue
- 1
- Pages
- 107-113
- ISSN
- 1098-3600 (ISSN-L)
- PMC
- PMC6289900
- OpenAlex
- W2805736463
- Cited by
- 129
- References
- 29
- Citations by year
- 2026: 10 · 2025: 12 · 2024: 23 · 2023: 25 · 2022: 23 · 2021: 13 · 2020: 19 · 2019: 4
- FWCI
- 8.58
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Genetics in Medicine (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health
- Palo Alto Medical Foundation
- U.S. National Library of Medicine (R01LM012180)
- 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
- biospecimen donation, electronic health records, research participation, patient perspectives, precision medicine, informed consent, research ethics, privacy concerns, human cloning, body and identity, research trust, racial and ethnic diversity
- MeSH terms
- Humans, Health Knowledge, Attitudes, Practice, Surveys and Questionnaires, Research Personnel, Biological Specimen Banks, Privacy, Information Dissemination, Biomedical Research, Precision Medicine, Electronic Health Records
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
