Family matters
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Kathy L. Hudson and Francis S. Collins discuss how and why the US National Institutes of Health worked with the family of Henrietta Lacks, the unwitting source of the HeLa cell line, to craft an agreement for access to HeLa genome data.
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An agreement was reached by which NIH-funded researchers who sequence HeLa cell lines are expected to deposit the data in a controlled-access database, and applications to study these data are reviewed by a committee that includes members of the Lacks family.
“An agreement was reached by which NIH-funded researchers who sequence HeLa cell lines are expected to deposit the data in a controlled-access database; applications to study these data are reviewed by a committee that includes members of the Lacks family (64).”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [64]
The story of Henrietta Lacks, her family, and the creation of HeLa cells has been a catalyst for policy change, including major regulatory changes proposed in the United States for informed consent for biospecimen research.
“The story has been a catalyst for policy change, including major regulatory changes proposed in the United States surrounding informed consent.”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [64]
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Cites
The Genomic and Transcriptomic Landscape of a HeLa Cell Line
Landry, J. J. M., Pyl, P. T., Rausch, T., Zichner, T., Tekkedil, M. M., Stütz, A. M., Jauch, A. S., Aiyar, R. S., Pau, G., Delhomme, N., et al. (2013) · G3 Genes Genomes Genetics · doi:10.1534/g3.113.005777 · Cited by 455 · see citing works
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Research works printed but not linked: 1
- Lin, Z., Owen, A. B., Altman & R. B. Science 305, 183 (2004).
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Prioritizing diversity in human genomics research
Hindorff, L. A., Bonham, V. L., Brody, L. C., Ginoza, M. E. C., Hutter, C. M., Manolio, T. A., & Green, E. D. (2018) · Nature Reviews Genetics · doi:10.1038/nrg.2017.89 · Cited by 386 · see citing works
Lessons from HeLa Cells: The Ethics and Policy of Biospecimens
Beskow, L. M. (2016) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-083115-022536 · Cited by 146 · see citing works
“An agreement was reached by which NIH-funded researchers who sequence HeLa cell lines are expected to deposit the data in a controlled-access database; applications to study these data are reviewed by a committee that includes members of the Lacks family (64).”
Background
- Authors
- Hudson, K. L., & Collins, F. S.
- Affiliations
- National Institutes of Health (US)
- Corresponding author
- Hudson, Kathy L.
- ORCID
- Collins, Francis S.
- Venue
- Nature
- Published
- 2013-08-07
- Volume
- 500
- Issue
- 7461
- Pages
- 141-142
- ISSN
- 0028-0836 (ISSN-L)
- 1476-4687
- PMC
- PMC5101952
- OpenAlex
- W2017183122
- Cited by
- 52
- References
- 1
- Citations by year
- 2026: 1 · 2025: 1 · 2024: 1 · 2023: 3 · 2022: 3 · 2021: 4 · 2020: 1 · 2019: 3 · 2018: 5 · 2017: 4 · 2016: 5 · 2015: 8 · 2014: 5 · 2013: 8
- FWCI
- 8.86
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Nature (publishedVersion, public-domain)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- Funders
- National Institutes of Health
- 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
- Henrietta Lacks, HeLa cells, family consent, research ethics, informed consent, biobanking, research data sharing
- MeSH terms
- Family, HeLa Cells, Humans, National Institutes of Health (U.S.), Specimen Handling, United States, Databases, Genetic, Genetic Privacy, Information Dissemination, Biomedical Research
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