ArticleAmerican journal of medical genetics. Part A2015
Community dissemination and genetic research: moving beyond results reporting.
Article in American journal of medical genetics. Part A, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Approaches to engaging faith communities in public health efforts regarding vaccination, genetics, and colorectal cancer: a systematic review.BMC public health · 2025Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Dissemination of trial results to study participants in Cambodia, Ethiopia and Pakistan: a qualitative study.BMJ open · 2026Trial
- Qualitative genomic research with Indigenous peoples: a scoping review of participatory practice.BMJ global health · 2024Article
- Culturally adapting an evidence-based intervention to promote a healthy diet and lifestyle for Yup'ik Alaska native communities.International journal of circumpolar health · 2023Article
- Disseminating complex primary outcome results from a community-randomised trial to Zambian communities: lessons learned using a community dialogue approach in the HPTN 071 (PopART) trial.The lancet. HIV · 2022Review
- Addressing underrepresentation in genomics research through community engagement.American journal of human genetics · 2022Review
- Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.BMC medical ethics · 2022Article
- Values and Practices to Strengthen Genetic Research Partnerships with Indigenous Communities.Progress in community health partnerships : research, education, and action · 2022Article
- Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes.Frontiers in genetics · 2022Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Hmong participants' reactions to return of individual and community pharmacogenetic research results: "A positive light for our community".Journal of community genetics · 2021Article
- "The results are encouragements to make positive changes to be healthier:" qualitative evaluation of Marshallese participants' perceptions when receiving study results in a randomized control trial.Contemporary clinical trials communications · 2020Article
- Characterizing health researcher barriers to sharing results with study participants.Journal of clinical and translational science · 2019Article
- Perspectives on communication and engagement with regard to collecting biospecimens and family health histories for cancer research in a rural Alaska Native community.Journal of community genetics · 2019Article
- Researchers' experiences with and perceptions of returning results to participants: Study protocol.Contemporary clinical trials communications · 2018Article
- Health Research Funding Agencies' Policies, Recommendations, and Tools for Dissemination.Progress in community health partnerships : research, education, and action · 2018Article
- Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach.Journal of community genetics · 2017Article
- Participatory epidemiology: the contribution of participatory research to epidemiology.Emerging themes in epidemiology · 2017Review
- Health research participants' preferences for receiving research results.Clinical trials (London, England) · 2016Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.