Community Dissemination and Genetic Research: Moving beyond Results Reporting
Open accessAbstract
The community‐based participatory research (CBPR) literature notes that researchers should share study results with communities. In the case of human genetic research, results may be scientifically interesting but lack clinical relevance. The goals of this study were to learn what kinds of information community members want to receive about genetic research and how such information should be conveyed. We conducted eight focus group discussions with Yup'ik Alaska Native people in southwest Alaska (N = 60) and 6 (N = 61) with members of a large health maintenance organization in Seattle, Washington. Participants wanted to receive genetic information they “could do something about” and wanted clinically actionable information to be shared with their healthcare providers; they also wanted researchers to share knowledge about other topics of importance to the community. Although Alaska Native participants were generally less familiar with western scientific terms and less interested in web‐based information sources, the main findings were the same in Alaska and Seattle: participants wished for ongoing dialogue, including opportunities for informal, small‐group conversations, and receiving information that had local relevance. Effective community dissemination is more than a matter of presenting study results in lay language. Community members should be involved in both defining culturally appropriate communication strategies and in determining which information should be shared. Reframing dissemination as a two‐way dialogue, rather than a one‐way broadcast, supports the twin aims of advancing scientific knowledge and achieving community benefit. © 2015 Wiley Periodicals, Inc.
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Indigenous communities have often challenged the extractive nature of genetic research.
“This disconnect is clearly evident in the case of Indigenous communities who have often challenged the extractive nature of genetic research (Boyer et al., 2007; Shaw et al., 2013; Trinidad et al., 2015; Haring et al., 2018; Chadwick et al., 2019; Dirks et al., 2019).”
From Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes (2022) · cites this paper as Trinidad et al., 2015
The Introduction says genetic research can raise concerns about misuse or misappropriation, and Results (‘Interest in genetic information varies’) acknowledges negative experiences of Indigenous communities. But the paper does not establish that Indigenous communities have often challenged research as extractive; the Yup’ik participants it studied were receptive to genetic research. (LLM, conf=0.84)
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Research works printed but not linked: 33
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Cited by
Sorted by citations
Carroll, S. R., Garba, I., Plevel, R., Small-Rodriguez, D., Hiratsuka, V. Y., Hudson, M., & Garrison, N. A. (2022) · Frontiers in Genetics · doi:10.3389/fgene.2022.823309 · Cited by 95 · see citing works
- Authors
- Trinidad, S. B., Ludman, E. J., Hopkins, S., James, R. D., Hoeft, T. J., Kinegak, A., Lupie, H., Kinegak, R., Boyer, B. B., & Burke, W.
- Affiliations
- University of Washington (US)
- Kaiser Permanente Washington Health Research Institute (US)
- University of Alaska Fairbanks (US)
- Corresponding author
- Trinidad, Susan Brown
- ORCID
- Venue
- American Journal of Medical Genetics Part A
- Publisher
- Wiley
- Published
- 2015-04-21
- Volume
- 167
- Issue
- 7
- Pages
- 1542-1550
- ISSN
- 1552-4825 (ISSN-L)
- 1552-4833
- PMC
- PMC4478235
- OpenAlex
- W1994623736
- Cited by
- 32
- References
- 0
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 2 · 2022: 6 · 2021: 5 · 2020: 4 · 2019: 4 · 2018: 2 · 2017: 3 · 2016: 2 · 2015: 1
- FWCI
- 2.85
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- American Journal of Medical Genetics Part A (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Human Genome Research Institute (5R01HG005221)
- National Institute of General Medical Sciences (U01GM092676)
- 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 › Health Professions › General Health Professions › Community Health and Development
- Keywords
- community dissemination, human genetic research, community-based participatory research, genomic data sharing, culturally appropriate communication, two-way dialogue, community benefits, lay language, health maintenance organization members
- MeSH terms
- Alaska, Inuit, Genetics, Medical, Health Maintenance Organizations, Humans, Washington, Focus Groups, Internet, Information Dissemination, Community-Based Participatory Research, Research Report
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