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Genomic data-sharing: what will be our legacy?
Open accessAbstract
Prior to 1974, the Tuskegee Syphilis experiments, expansive use of the HeLa cells, and other blatant instances of research abuse pervaded the medical research field. Ongoing challenges to informed consent, privacy and data-sharing will influence the stories that research participants today share with future generations. This has significant implications for the advancement of genomic science, and the public's perception of genomic research.
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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 [20]
The “Lessons from HeLa” section discusses informed consent, privacy, the Lacks family’s genetic information, and investigators benefiting from HeLa cells while the family remained poor. The Introduction also discusses control over samples, and a later section addresses skepticism about biomedical research. The paper does not assess how frequently these themes appeared across professional literature, so it does not establish the claimed marked emphasis. (LLM, conf=0.82)
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References 15 · Cited by 8
Research works printed but not linked: 4
- Goldenberg, 2013, Next-generation disadvantages: identifying potential barriers to integrating genomics into underserved medical settings, Personalized Med, 10, 623, 10.2217/pme.13.75 · DOI
- Green, 2011, Charting a course for genomic medicine from base pairs to bedside, Nature, 470, 204, 10.1038/nature09764 · DOI
- Henderson, 2008, Great expectations: views of genetic research participants regarding current and future genetic studies, Genet. Med, 10, 193, 10.1097/GIM.0b013e318164e4f5 · DOI
- Henderson, 2012, What research ethics should learn from genomics and society research: lessons from the ELSI congress of 2011, J. Law Med. Ethics, 40, 1008, 10.1111/j.1748-720X.2012.00728.x · DOI
Metadata
- Authors
- Callier, S., Husain, R., & Simpson, R.
- Affiliations
- George Washington University (US)
- Corresponding author
- Callier, Shawneequa
- ORCID
- Callier, Shawneequa
- Venue
- Frontiers in Genetics
- Publisher
- Frontiers Media SA
- Published
- 2014-03-05
- Volume
- 5
- Pages
- 34-34
- ISSN
- 1664-8021 (ISSN-L)
- PMC
- PMC3942643
- OpenAlex
- W1964777483
- Cited by
- 8
- References
- 15
- Citations by year
- 2022: 1 · 2019: 1 · 2017: 1 · 2016: 2 · 2015: 1 · 2014: 2
- FWCI
- 1.99
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Frontiers in Genetics (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- George Washington University
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- genomic data sharing, research ethics, informed consent, privacy, Tuskegee syphilis study, HeLa cells
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