“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.
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
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?
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.
“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]
Split into 2 atoms — 1 confirmed, 1 partially supported, 0 disputed, 0 misattributed, 0 unverifiable. Expand the claim to see per-atom verdicts.
Experimental — accuracy not yet measuredSome participants would like to have separate consent for biospecimens and EHR data, as they see a risk for misuse of DNA in future research.
“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]
Some participants in the study argued that if biospecimens contributes to corporate profit, patients should be compensated.
“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]
Some people would like to be compensated for their donation if pharmaceutical companies gain a high profit with it.
“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.
Cites
Ryan, G. W., & Bernard, H. R. (2003) · Field Methods · doi:10.1177/1525822x02239569 · Cited by 5,475 · see citing works
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 · see citing works
Mattley, C. L., Strauss, A., & Corbin, J. M. (1999) · Contemporary Sociology A Journal of Reviews · doi:10.2307/2655359 · Cited by 2,410 · see citing works
George, S., Duran, N., & Norris, K. (2014) · American Journal of Public Health · doi:10.2105/ajph.2013.301706 · Cited by 1,603 · see citing works
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 · see citing works
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 1,177 · see citing works
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 1,004 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
Public Opinion about the Importance of Privacy in Biobank Research
Kaufman, D. J., Murphy-Bollinger, J., Scott, J., & Hudson, K. L. (2009) · The American Journal of Human Genetics · doi:10.1016/j.ajhg.2009.10.002 · Cited by 279 · see citing works
Sankar, P. L., & Parker, L. S. (2016) · Genetics in Medicine · doi:10.1038/gim.2016.183 · Cited by 276 · see citing works
Kraft, S. A., Cho, M. K., Gillespie, K., Halley, M., Varsava, N., Ormond, K. E., Luft, H. S., Wilfond, B. S., & Lee, S. S.-J. (2018) · The American Journal of Bioethics · doi:10.1080/15265161.2018.1431322 · Cited by 271 · see citing works
Self-citationSanderson, S. C., Brothers, K. B., Mercaldo, N. D., Clayton, E. W., Antommaria, A. H. M., Aufox, S. A., Brilliant, M. H., Campos, D., Carrell, D., Connolly, J. J., et al. (2017) · The American Journal of Human Genetics · doi:10.1016/j.ajhg.2017.01.021 · Cited by 241 · see citing works
Durant, R. W., Wenzel, J. A., Scarinci, I. C., Paterniti, D. A., Fouad, M. N., Hurd, T. C., & Martin, M. Y. (2014) · Cancer · doi:10.1002/cncr.28574 · Cited by 192 · see citing works
Bates, B. R., Lynch, J., Bevan, J. L., & Condit, C. M. (2004) · Social Science & Medicine · doi:10.1016/j.socscimed.2004.05.012 · Cited by 154 · see citing works
Patients' Views on Identifiability of Samples and Informed Consent for Genetic Research
Hull, S. C., Sharp, R. R., Botkin, J. R., Brown, M. A., Hughes, M., Sugarman, J., Schwinn, D. A., Sankar, P. L., Bolcic‐Jankovic, D., Clarridge, B. R., et al. (2008) · The American Journal of Bioethics · doi:10.1080/15265160802478404 · Cited by 108 · see citing works
Self-citationPlatt, J. E., & Kardia, S. L. R. (2015) · Journal of Personalized Medicine · doi:10.3390/jpm5010003 · Cited by 97 · see citing works
Waldby, C., Rosengarten, M., Treloar, C., & Fraser, S. (2004) · Social Science & Medicine · doi:10.1016/j.socscimed.2004.01.012 · Cited by 90 · see citing works
Identifiability in biobanks: models, measures, and mitigation strategies
Malin, B., Loukides, G., Benitez, K., & Clayton, E. W. (2011) · Human Genetics · doi:10.1007/s00439-011-1042-5 · Cited by 84 · see citing works
Genes, cells and brains: the Promethean promises of the new biology
(2013) · Choice Reviews Online · doi:10.5860/choice.51-0873 · Cited by 84 · see citing works
Joly, Y., Dalpé, G., So, D. F., & Birko, S. (2015) · PLoS ONE · doi:10.1371/journal.pone.0129893 · Cited by 62 · see citing works
Bad Copies: How Popular Media Represent Cloning as an Ethical Problem
Hopkins, P. D. (1998) · The Hastings Center Report · doi:10.2307/3527566 · Cited by 51 · see citing works
A survey of patient perspectives on the research use of health information and biospecimens
Page, S. A., Manhas, K. P., & Muruve, D. A. (2016) · BMC Medical Ethics · doi:10.1186/s12910-016-0130-4 · Cited by 37 · see citing works
Storage and use of residual newborn screening blood spots: A public policy emergency
Tarini, B. A. (2011) · Genetics in Medicine · doi:10.1097/gim.0b013e31822176df · Cited by 29 · see citing works
Confronting Biospecimen Exceptionalism in Proposed Revisions to the Common Rule
Lynch, H. F., Bierer, B. E., & Cohen, I. G. (2016) · The Hastings Center Report · doi:10.1002/hast.528 · Cited by 17 · see citing works
Metaphors matter: from biobank to a library of medical information
Cho, M. K., Varsava, N., Kraft, S. A., Ashwal, G., Gillespie, K., Magnus, D. C., Ormond, K. E., Thomas, A., Wilfond, B. S., & Lee, S. S. (2017) · Genetics in Medicine · doi:10.1038/gim.2017.204 · Cited by 7 · see citing works
Self-citationA Flawed Revision of the Common Rule
Joffe, S., & Magnus, D. C. (2016) · Annals of Internal Medicine · doi:10.7326/m16-0119 · Cited by 4 · see citing works
Self-citation
Flagged first, then by citations
1 of the 29 references couldn’t be matched to a known paper.
Cited by
Sorted by citations
Structural racism in precision medicine: leaving no one behind
Geneviève, L. D., Martani, A., Shaw, D., Elger, B. S., & Wangmo, T. (2020) · BMC Medical Ethics · doi:10.1186/s12910-020-0457-8 · Cited by 126 · see citing works
Erdmann, A., Rehmann-Sutter, C., & Bozzaro, C. (2021) · BMC Medical Ethics · doi:10.1186/s12910-021-00682-8 · Cited by 86 · see citing works
Towards equitable and trustworthy genomics research
Atutornu, J., Milne, R., Costa, A., Patch, C., & Middleton, A. (2022) · EBioMedicine · doi:10.1016/j.ebiom.2022.103879 · Cited by 79 · see citing works
Kassam, I., Ilkina, D., Kemp, J., Roble, H., Carter-Langford, A., & Shen, N. (2023) · Journal of Medical Internet Research · doi:10.2196/42507 · Cited by 74 · see citing works
Structural Racism in the COVID-19 Pandemic: Moving Forward
Sabatello, M., Scroggins, M. J., Goto, G., Santiago, A., McCormick, A. K. H. G., Morris, K. J., Daulton, C. R., Easter, C. L., & Darien, G. (2020) · The American Journal of Bioethics · doi:10.1080/15265161.2020.1851808 · Cited by 69 · see citing works
Brain organoids, consciousness, ethics and moral status
Jeziorski, J. J., Brandt, R., Evans, J. H., Campana, W. M., KALICHMAN, M. W., Thompson, E. T., Goldstein, L. S. B., Koch, C., & Muotri, A. R. (2022) · Seminars in Cell and Developmental Biology · doi:10.1016/j.semcdb.2022.03.020 · Cited by 67 · see citing works
Predictors of Participation in Clinical Research
Scanlon, J. K., Wofford, L. G., Fair, A. M., & Phillippi, D. (2021) · Nursing Research · doi:10.1097/nnr.0000000000000513 · Cited by 61 · see citing works
Obligations of the “Gift”: Reciprocity and Responsibility in Precision Medicine
Lee, S. S. (2020) · The American Journal of Bioethics · doi:10.1080/15265161.2020.1851813 · Cited by 60 · see citing works
Self-citationTaking an antiracist posture in scientific publications in human genetics and genomics
Brothers, K. B., Bennett, R. L., & Cho, M. K. (2021) · Genetics in Medicine · doi:10.1038/s41436-021-01109-w · Cited by 62 · see citing works
Self-citationAhmed, L., Constantinidou, A., & Chatzittofis, A. (2023) · Frontiers in Medicine · doi:10.3389/fmed.2023.1215663 · Cited by 57 · see citing works
Scherr, C. L., Ramesh, S., Marshall-Fricker, C., & Perera, M. A. (2019) · Frontiers in Genetics · doi:10.3389/fgene.2019.00548 · Cited by 52 · see citing works
Samuel, G. N., & Richie, C. (2022) · Journal of Medical Ethics · doi:10.1136/jme-2022-108489 · Cited by 44 · see citing works
Munung, N. S., de Vries, J., & Pratt, B. (2021) · Medicine Health Care and Philosophy · doi:10.1007/s11019-021-10012-9 · Cited by 42 · see citing works
van Kessel, R., Ranganathan, S., Anderson, M., McMillan, B., & Mossialos, E. A. (2024) · International Journal of Medical Informatics · doi:10.1016/j.ijmedinf.2024.105513 · Cited by 34 · see citing works
Lee, C., & McCaskill‐Stevens, W. (2020) · Journal of the National Medical Association · doi:10.1016/j.jnma.2020.05.021 · Cited by 26 · see citing works
Critchley, C. R., Fleming, J., Nicol, D., Marlton, P. V., Ellis, M. M., Devereux, L., Bruce, G., & Kerridge, I. (2021) · European Journal of Human Genetics · doi:10.1038/s41431-020-00746-0 · Cited by 26 · see citing works
The Intersection of Race, Racism, and Child and Adolescent Health
Jindal, M., Trent, M., & Mistry, K. B. (2022) · Pediatrics in Review · doi:10.1542/pir.2020-004366 · Cited by 27 · see citing works
The ethical challenges of diversifying genomic data: A qualitative evidence synthesis
Hardcastle, F., Lyle, K., Horton, R. H., Samuel, G. N., Weller, S., Ballard, L. M., Thompson, R. L., Trindade, L. V. D. P., Urrego, J. D. G., Kochin, D., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20 · Cited by 29 · see citing works
Public engagement with genomics
Middleton, A., Adams, A., Aidid, H., Atutornu, J., Boraschi, D., Borra, J., Bircan, T., Burch, C., Costa, A., Dickinson, A., et al. (2023) · Wellcome Open Research · doi:10.12688/wellcomeopenres.19473.2 · Cited by 24 · see citing works
Incorporating Biobank Consent into a Healthcare Setting: Challenges for Patient Understanding
Kasperbauer, T. J., Schmidt, K., Thomas, A., Perkins, S. M., & Schwartz, P. H. (2020) · AJOB Empirical Bioethics · doi:10.1080/23294515.2020.1851313 · Cited by 23 · see citing works
Passmore, S. R., Jamison, A., Hancock, G. R., Abdelwadoud, M., Mullins, C. D., Rogers, T. B., & Thomas, S. B. (2019) · Public Health Genomics · doi:10.1159/000505271 · Cited by 22 · see citing works
Kikut, A., Sanyal, M., Vaughn, M., Ridley-Merriweather, K. E., Head, K. J., Salowe, R., Lomax-Reese, S., Lewis, M., Ross, A. G., Cui, Q. N., et al. (2020) · Health Communication · doi:10.1080/10410236.2020.1853897 · Cited by 20 · see citing works
Kasperbauer, T. J., Halverson, C. M. E., Garcia, A., & Schwartz, P. H. (2021) · Journal of Empirical Research on Human Research Ethics · doi:10.1177/15562646211055282 · Cited by 19 · see citing works
Liu, B., & Wei, L. (2022) · Computers in Human Behavior · doi:10.1016/j.chb.2022.107537 · Cited by 20 · see citing works
Watson, K. S., Cohn, E. G., Fair, A. M., Menon, U., Szalacha, L. A., Carpenter, S. M., & Wilkins, C. H. (2022) · Health Expectations · doi:10.1111/hex.13486 · Cited by 18 · see citing works
The Ethics of Consent in a Shifting Genomic Ecosystem
Lee, S. S. (2021) · Annual Review of Biomedical Data Science · doi:10.1146/annurev-biodatasci-030221-125715 · Cited by 16 · see citing works
Self-citationRecruiting diversity where it exists: The Alabama Genomic Health Initiative
May, T., Cannon, A. D., Moss, I., Nakano‐Okuno, M., Hardy, S., Miskell, E. L., Kelley, W. V., Curry, W. A., East, K. M., Acemgil, A., et al. (2020) · Journal of Genetic Counseling · doi:10.1002/jgc4.1258 · Cited by 17 · see citing works
African American Nurses' Perspectives on Genomic Medicine Research
Hendricks‐Sturrup, R., Edgar, L. M., Johnson-Glover, T., & Lu, C. Y. (2021) · The AMA Journal of Ethic · doi:10.1001/amajethics.2021.240 · Cited by 16 · see citing works
Evans, J. H. (2024) · doi:10.1093/oso/9780197750704.001.0001 · Cited by 16 · see citing works
Preface: Precision Medicine Approaches to Health Disparities Research
Griffith, D. M. (2020) · Ethnicity & Disease · doi:10.18865/ed.30.s1.129 · Cited by 15 · see citing works
Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues
Kasperbauer, T. J., & Halverson, C. M. E. (2021) · Frontiers in Medicine · doi:10.3389/fmed.2021.686264 · Cited by 16 · see citing works
ChatGPT is a promising tool to increase readability of orthopedic research consents
Gill, B., Bonamer, J. P., Kuechly, H. A., Gupta, R., Emmert, S., Kurkowski, S. C., Hasselfeld, K. A., & Grawe, B. M. (2024) · Journal of Orthopaedics Trauma and Rehabilitation · doi:10.1177/22104917231208212 · Cited by 14 · see citing works
The ethical aspects of human organ-on-chip models: A mapping review
Weidema, J., de Vries, M., Mummery, C. L., & de Graeff, N. (2025) · Stem Cell Reports · doi:10.1016/j.stemcr.2025.102686 · Cited by 13 · see citing works
Spector‐Bagdady, K. (2025) · The American Journal of Bioethics · doi:10.1080/15265161.2025.2554770 · Cited by 13 · see citing works
Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.4 · Cited by 13 · see citing works
Ursin, L. O., Ytterhus, B., Christensen, E., & Skolbekken, J. (2020) · Medicine Health Care and Philosophy · doi:10.1007/s11019-020-09969-w · Cited by 13 · see citing works
Brown, J. E. H., Zamora, A. N., Outram, S. M., Sparks, T. N., Lianoglou, B. R., Norstad, M., Hodoglugil, N. N. S., Norton, M. E., & Ackerman, S. (2022) · Frontiers in Genetics · doi:10.3389/fgene.2022.882703 · Cited by 12 · see citing works
Williams, J. K., Bonham, V. L., Wicklund, C. A. L., Coleman, B. L., Taylor, J. Y., & Cashion, A. K. (2019) · Nursing Outlook · doi:10.1016/j.outlook.2019.06.004 · Cited by 12 · see citing works
Woodbury, R. B., Beans, J. A., Wark, K. A., Spicer, P., & Hiratsuka, V. Y. (2020) · Frontiers in Communication · doi:10.3389/fcomm.2020.00070 · Cited by 12 · see citing works
Nursing strategies to address health disparities in genomics-informed care: a scoping review
Limoges, J., Chiu, P., Dordunoo, D., Puddester, R., Pike, A. D., Wonsiak, T., Zakher, B., Carlsson, L., & Mussell, J. (2024) · JBI Evidence Synthesis · doi:10.11124/jbies-24-00009 · Cited by 11 · see citing works
Lessons Learned in Clinical Research Recruitment of Midlife Latinas During COVID-19
Cortés, Y. I., Duran, M., Mărginean, V., Harris, L. K. K., Cazales, A., Santíago, L., Mislan, M. D., & Perreira, K. M. (2022) · Menopause The Journal of The North American Menopause Society · doi:10.1097/gme.0000000000001983 · Cited by 11 · see citing works
Kraft, S. A., Duenas, D. M., & Shah, S. K. (2023) · BMC Medical Ethics · doi:10.1186/s12910-023-00954-5 · Cited by 11 · see citing works
Self-citationEthical Challenges in COVID-19 Biospecimen Research
Lapid, M. I., Meagher, K. M., Giunta, H., Clarke, B. L., Ouellette, Y., Armbrust, T. L., Sharp, R. R., & Wright, R. S. (2020) · Mayo Clinic Proceedings · doi:10.1016/j.mayocp.2020.10.021 · Cited by 11 · see citing works
Milne, R., Morley, K. I., Almarri, M. A., Atutornu, J., Baranova, E. E., Bevan, P., Cerezo, M., Cong, Y., Costa, A., Feijao, C., et al. (2022) · Genetics in Medicine · doi:10.1016/j.gim.2022.01.002 · Cited by 11 · see citing works
Genetic Data Aren't So Special: Causes and Implications of Reidentification
Kasperbauer, T. J., & Schwartz, P. H. (2020) · The Hastings Center Report · doi:10.1002/hast.1183 · Cited by 10 · see citing works
Understanding synthetic data: artificial datasets for real-world evidence
Foraker, R. E., Morrow, J. D., Johnson, J. A., Wilcox, A. B., Forster, A. J., & Payne, P. (2025) · BMJ Evidence-Based Medicine · doi:10.1136/bmjebm-2024-113617 · Cited by 9 · see citing works
The ethics and economics of organoid commercialization: potential donors’ perspectives
de Groot, H., van Daal, M., Hofland, R. W., Bronsveld, I., Jongsma, K. R., & ten Ham, R. M. T. (2025) · BMC Medical Ethics · doi:10.1186/s12910-025-01269-3 · Cited by 9 · see citing works
Norstad, M., Outram, S. M., Brown, J. E. H., Zamora, A. N., Koenig, B. A., RISCH, N. J., Norton, M. E., Slavotinek, A. M., & Ackerman, S. (2021) · Genetics in Medicine · doi:10.1016/j.gim.2021.09.021 · Cited by 9 · see citing works
Religious Perspectives on Precision Medicine in Singapore
Toh, H. J., Ballantyne, A., Ong, S. A. K., Sankaran, C., Tay, H. Y., Singh, M., Zaidi, R., Chia, R., Singh, S., Samachittananda, S., et al. (2021) · Asian Bioethics Review · doi:10.1007/s41649-021-00180-4 · Cited by 8 · see citing works
Ready, Set, Sort! A User-Guide to Card Sorts for Community-Engaged Empirical Bioethics
Meagher, K. M., Watson, S., Kaz, L., Callier, S., Prince, A. E. R., & Cadigan, R. J. (2024) · Journal of Empirical Research on Human Research Ethics · doi:10.1177/15562646241281802 · Cited by 8 · see citing works
Ethical Issues in Research and Development of Epigenome-wide Technologies
Bunnik, E. M., Timmers, M., & Bolt, I. L. L. E. (2020) · Epigenetics Insights · doi:10.1177/2516865720913253 · Cited by 8 · see citing works
The Public’s Ethical Issues with Brain Organoid Research and Application
Evans, J. H. (2022) · AJOB Neuroscience · doi:10.1080/21507740.2022.2048727 · Cited by 8 · see citing works
Methodological opportunities in genomic data analysis to advance health equity
Lehmann, B., Bräuninger, L., Cho, Y., Falck, F., Jayadeva, S., Katell, M. A., Nguyen, T., Perini, A., Tallman, S., Mackintosh, M. E., et al. (2025) · Nature Reviews Genetics · doi:10.1038/s41576-025-00839-w · Cited by 7 · see citing works
Parent attitudes towards data sharing in developmental science
Ali, J. B., Holman, R., Goodwin, A. L., Heraty, S., & Jones, E. J. H. (2024) · Open Research Europe · doi:10.12688/openreseurope.16516.2 · Cited by 7 · see citing works
Biobanking: How Oncology Nurses Can Contribute to Its Use
Miller, L., & Rosenzweig, M. (2021) · Clinical journal of oncology nursing · doi:10.1188/21.cjon.637-639 · Cited by 7 · see citing works
Wrestling with Public Input on an Ethical Analysis of Scientific Research
Martschenko, D. O., Callier, S., Garrison, N. A., Lee, S. S., Turley, P., Meyer, M. N., & Parens, E. (2023) · The Hastings Center Report · doi:10.1002/hast.1478 · Cited by 7 · see citing works
Self-citationEnabling Health Data Sharing with Fine-Grained Privacy
Bonomi, L., Gousheh, S., & Fan, L. (2023) · ACM International Conference on Information and Knowledge Management (CIKM) · doi:10.1145/3583780.3614864 · Cited by 7 · see citing works
Are Public Repository Requirements Exacerbating Lack of Diversity?
May, T. (2020) · Trends in Genetics · doi:10.1016/j.tig.2020.03.004 · Cited by 6 · see citing works
Frost, C. J., Johnson, E. P., Witte, B., Stark, L. A., Botkin, J., & Rothwell, E. (2021) · Journal of Community Genetics · doi:10.1007/s12687-020-00496-y · Cited by 5 · see citing works
Palliative Care as a Necropolitical Technology
Robertson, H., & Travaglia, J. (2022) · ANU Press eBooks · doi:10.22459/vad.2022.02 · Cited by 5 · see citing works
Parent attitudes towards data sharing in developmental science
Ali, J. B., Holman, R., Goodwin, A. L., Heraty, S., & Jones, E. J. H. (2023) · Open Research Europe · doi:10.12688/openreseurope.16516.1 · Cited by 5 · see citing works
Galbraith‐Gyan, K. V., Ramanadhan, S., & Viswanath, K. (2020) · International Quarterly of Community Health Education · doi:10.1177/0272684x20942071 · Cited by 5 · see citing works
N = many me’s: self-surveillance for Precision Public Health
Vegter, M. W., Landeweerd, L., & Zwart, H. A. E. (2020) · BioSocieties · doi:10.1057/s41292-020-00202-8 · Cited by 5 · see citing works
Artificial Intelligence in Otolaryngology
Tai, K., Zhao, R., & Rameau, A. (2024) · Otolaryngologic Clinics of North America · doi:10.1016/j.otc.2024.04.008 · Cited by 4 · see citing works
Post-identifiability in changing sociotechnological genomic data environments
Akyüz, K., Goisauf, M., Chassang, G., Kozera, Ł., Mežinska, S., Tzortzatou, O., & Mayrhofer, M. T. (2023) · BioSocieties · doi:10.1057/s41292-023-00299-7 · Cited by 5 · see citing works
Privacy, Policy, and Profits: Survey of Patient Preferences for Research on De-Identified Biosamples
Hood, A. J., Macis, M., Mendoza-Cervantes, D., Bear, T., Kahn, J. P., Xavier, J., Lee, A. V., Dewan, A. S., & Gross, M. S. (2025) · Journal of Empirical Research on Human Research Ethics · doi:10.1177/15562646251346940 · Cited by 3 · see citing works
Ethical Considerations in Geriatric Dentistry
Smith, C. S. (2022) · Springer eBooks · doi:10.1007/978-3-030-85993-0_12 · Cited by 3 · see citing works
Trust in prenatal exome sequencing for expectant families facing unexplained fetal anomalies
Rothschild, H., Lianoglou, B. R., Sahin‐Hodoglugil, N., Tick, K., Brown, J. E. H., & Sparks, T. N. (2023) · Prenatal Diagnosis · doi:10.1002/pd.6507 · Cited by 3 · see citing works
Imbalanced media portrayal: a content analysis of precision medicine in US news of 2015–2021
Peng, W., Seo, H. Y., Choi, J., & Jia, X. (2024) · Frontiers in Communication · doi:10.3389/fcomm.2024.1366952 · Cited by 3 · see citing works
Tailored community engagement to address the genetics diversity gap
Hanchard, N. A., Chahrour, M. H., & de Vries, J. (2022) · Med · doi:10.1016/j.medj.2022.05.010 · Cited by 3 · see citing works
DuBois, J. M., Chin, E. G., Solomon, E. D., Harris, J. K., Hill, P., Baldwin, K. A., & Baker, L. L. (2025) · Frontiers in Genetics · doi:10.3389/fgene.2025.1587774 · Cited by 2 · see citing works
Voluntary Assisted Dying: Law? Health? Justice?
Fleming, D. J., & Carter, D. J. (2022) · ANU Press eBooks · doi:10.22459/vad.2022 · Cited by 2 · see citing works
Co-creation and engagement in a DNA integrity cohort study
Parker, L. L., Bonner, C. M., Sobol, R. W., & Arrieta, M. I. (2023) · Journal of Clinical and Translational Science · doi:10.1017/cts.2023.556 · Cited by 2 · see citing works
Biobanks—Organization, operations, and role in genomics research
Bledsoe, M. J., & Watson, P. H. (2024) · Elsevier eBooks · doi:10.1016/b978-0-323-91799-5.00003-6 · Cited by 2 · see citing works
Passmore, S., Jamison, A. M., Abdelwadoud, M., Rogers, T. B., Wiggan, M., Mullins, D. C., & Thomas, S. B. (2020) · Field Methods · doi:10.1177/1525822x20982089 · Cited by 2 · see citing works
Johnson, R., Ingram, D., Davis, P., & Gordon, S. (2020) · Metropolitan Universities · doi:10.18060/24054 · Cited by 2 · see citing works
What Brain Organoid Research Can Gain From Engaging Biospecimen Donors
MacDuffie, K. E. (2022) · AJOB Neuroscience · doi:10.1080/21507740.2022.2048734 · Cited by 2 · see citing works
Neilan, A. M., Tyagi, A., Tong, Y., Farkas, E. J., Burns, M. D., Fialkowski, A., Park, G. S. H., Hardcastle, M., Gootkind, E., Bassett, I. V., et al. (2022) · BMC Pediatrics · doi:10.1186/s12887-022-03185-6 · Cited by 2 · see citing works
Precision medicine and the ethics of electronic health records and genomics
Petersen, C. C., & Boyd, A. D. (2023) · Elsevier eBooks · doi:10.1016/b978-0-12-824010-6.00080-0 · Cited by 1 · see citing works
Relational Help-Seeking Among Newlywed African American Couples
Mussa, K. S., Dini, Z., & Bryant, C. M. (2023) · Journal of African American Studies · doi:10.1007/s12111-023-09632-7 · Cited by 1 · see citing works
Gooding, D. C., Mohrbacher, D., Umucu, E., Hulle, C. A. V., Lewis, J., Carter, F. P., & Gleason, C. E. (2024) · Psychiatry Research · doi:10.1016/j.psychres.2024.115776 · Cited by 1 · see citing works
Dolan, D. D., Cho, M. K., & Lee, S. S. (2024) · AJOB Empirical Bioethics · doi:10.1080/23294515.2024.2355893 · Cited by 1 · see citing works
Self-citationCultural Competency and Genetic Counseling
Warren, N. S. (2020) · Wiley eBooks · doi:10.1002/9781119529873.ch11 · Cited by 1 · see citing works
Is Consent Required for Genetic Research in a Death Investigation System in Canada?
Boone, S. A. (2019) · ERA: Education and Research Archive (University of Alberta) · doi:10.7939/r3-tkxc-1j63
Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr5
Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr3
Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr2
Smith, T. F. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr1
Geneviève, L. D., Elger, B. S., & Wangmo, T. (2022) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2022.9.pr4
Allen, C. G., Jefferson, M. S., Magwood, G., Melvin, C. L., Babatunde, O. A., & Halbert, C. H. (2023) · Journal of Clinical and Translational Science · doi:10.1017/cts.2023.573
Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr3
Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr4
Hardcastle, F. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr6
Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr10
Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr7
Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr8
Hardcastle, F. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr1
Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr9
Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr2
Hardcastle, F., Lyle, K., Horton, R., et al. (2023) · Cambridge Prisms Precision Medicine · doi:10.1017/pcm.2023.20.pr5
- 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 › Medicine › Physiology › 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
