Research Practice and Participant Preferences: The Growing Gulf
Open accessAbstract
Reframing research practice to align with participant interests is important for ensuring long-term success of genomic investigation.
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In the Trinidad et al. commentary on Group Health research, themes included trust in Group Health and ACT investigators, altruistic motivations, and little concern about privacy, confidentiality, or discrimination, and the authors concluded that many participants view themselves as having an ongoing stake in research and want to be asked or at least kept informed about changes in research.
“Themes mentioned in the commentary included trust in Group Health and ACT investigators, altruistic motivations, and little concern about privacy, confidentiality, or discrimination. The authors concluded that many participants view themselves as having an ongoing stake in research to which they have contributed, and “want to be asked (or at least kept informed) about changes in research” (140, p.”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [140]
In support of proposed regulatory changes, the NPRM cited four articles reporting public opinions about biospecimen research, but these publications do not necessarily suggest consensus.
“In support of proposed regulatory changes, the NPRM cited four articles reporting public opinions about biospecimen research (77, 128, 140, 144). But as summarized below, these publications do not necessarily suggest consensus.”
From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [140]
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Cites
Dementia and Alzheimer Disease Incidence: A Prospective Cohort Study
Kukull, W. A., Higdon, R., Bowen, J. D., McCormick, W. C., Teri, L., Schellenberg, G. D., van Belle, G., Jolley, L., & Larson, E. B. (2002) · Archives of Neurology · doi:10.1001/archneur.59.11.1737 · Cited by 806 · see citing works
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Cited by
Sorted by citations
The tension between data sharing and the protection of privacy in genomics research
Kaye, J. (2012) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-082410-101454 · Cited by 240 · 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
“(140) that informally referred to a few findings from research at Group Health, a nonprofit health care system in Seattle, Washington.”
Background
- Authors
- Trinidad, S. B., Fullerton, S. M., Ludman, E. J., Jarvik, G. P., Larson, E. B., & Burke, W.
- Affiliations
- University of Washington (US)
- Kaiser Permanente Washington Health Research Institute (US)
- Corresponding author
- Trinidad, S. B.
- Venue
- Science
- Published
- 2011-01-21
- Volume
- 331
- Issue
- 6015
- Pages
- 287-288
- ISSN
- 0036-8075 (ISSN-L)
- 1095-9203
- PMC
- PMC3044500
- OpenAlex
- W1968754510
- Cited by
- 87
- References
- 1
- Citations by year
- 2023: 1 · 2022: 3 · 2021: 2 · 2020: 2 · 2019: 6 · 2017: 4 · 2016: 10 · 2015: 10 · 2014: 8 · 2013: 14 · 2012: 15
- FWCI
- 15.37
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Science (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Funders
- National Institute on Aging (U01AG006781)
- National Human Genome Research Institute (U01HG004610, U01HG006375)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- genomic research, participant preferences, research ethics, participant-centered research, genomic data sharing, research practices
- MeSH terms
- Humans, Informed Consent, Public Opinion, Biological Specimen Banks, Genomics, Ethics, Research, Information Dissemination, Researcher-Subject Relations, Genetic Research, Electronic Health Records, Policy
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