Privacy and protection in the genomic era
Open accessAbstract
The establishment of an NIH working group managing access to HeLa cell genomic data highlights the limitations of assuring the privacy of participants in genomics studies. If, as this case illustrates, anonymity cannot be guaranteed, informed consent rules may need to be revised.
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Discussion in professional literature about the HeLa story comprised themes including marked emphasis on informed consent, commercialization and compensation, privacy and confidentiality, race, poverty, and health disparities, familial implications of genetic information, ownership of biospecimens, and trust in biomedical research.
“Discussion in professional literature comprised a similar array of themes, including marked emphasis on informed consent (20, 22,33,37, 49, 79, 123, 135, 147), as well as commercialization and compensation (123, 141); privacy and confidentiality (20, 33, 49); race, poverty, and health disparities (42, 123); familial implications of genetic information (14, 22,64, 96, 135); ownership of biospecimen”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [33]
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From patients to partners: participant-centric initiatives in biomedical research
Kaye, J., Curren, L., Anderson, N., Edwards, K., Fullerton, S. M., Kanellopoulou, N., Lund, D., MacArthur, D. G., Mascalzoni, D., Shepherd, J., et al. (2012) · Nature Reviews Genetics · doi:10.1038/nrg3218 · Cited by 293 · see citing works
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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
Harvard Personal Genome Project: lessons from participatory public research
Ball, M. P., Bobe, J. R., Chou, M. F., Clegg, T., Estep, P. W., Lunshof, J. E., Vandewege, W., Zaranek, A. W., & Church, G. M. (2014) · Genome Medicine · doi:10.1186/gm527 · Cited by 103 · see citing works
- Venue
- Nature Medicine
- Published
- 2013-09
- Volume
- 19
- Issue
- 9
- Pages
- 1073-1073
- ISSN
- 1078-8956 (ISSN-L)
- 1546-170X
- OpenAlex
- W4231227822
- Cited by
- 3
- References
- 1
- Citations by year
- 2020: 1 · 2016: 1 · 2014: 1
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Nature Medicine (publishedVersion, other-oa)
- PubMed (publishedVersion)
- 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 › Public Health, Environmental and Occupational Health › Medical and Health Sciences Research
- Keywords
- genetic privacy, HeLa cells, genomic data access, informed consent, participant anonymity, research participant protection
- MeSH terms
- Confidentiality, HeLa Cells, Humans, Informed Consent, Genome, Sequence Analysis, DNA, Genomics, Genetic Privacy
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