ArticleJournal of community genetics2019
Perspectives on communication and engagement with regard to collecting biospecimens and family health histories for cancer research in a rural Alaska Native community.
Article in Journal of community genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
16 citing papers in PubMed, 2 syntheses or guidelines pooled it, 21 citations in OpenAlex.
- A Systematic Review Exploring Empirical Pharmacogenomics Research Within Global Indigenous Populations.Molecular genetics & genomic medicine · 2024Pooled it
- A systematic literature review of Native American and Pacific Islanders' perspectives on health data privacy in the United States.Journal of the American Medical Informatics Association : JAMIA · 2020Pooled it
- Global Insights on the Involvement of Ethnic Minority Populations in Health and Social Care Research Priority Setting: A Systematic Scoping Review.Journal of racial and ethnic health disparities · 2026Article
- "I just don't know enough": Australian perspectives on community involvement in health and medical research.Research involvement and engagement · 2024Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes.Frontiers in genetics · 2022Article
- Améliorer le dépistage chez les patients autochtones.Canadian family physician Medecin de famille canadien · 2021Article
- Improving preventive screening with Indigenous peoples.Canadian family physician Medecin de famille canadien · 2021Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- Fostering Ethical, Legal, and Social Implications Research in Tribal Communities: The Center for the Ethics of Indigenous Genomic Research.Journal of empirical research on human research ethics : JERHRE · 2020Article
- Community Perspectives on Communicating About Precision Medicine in an Alaska Native Tribal Health Care System.Frontiers in communication · 2020Article
- An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation.PloS one · 2020Article
- Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research.Collaborations (Coral Gables, Fla.) · 2020Article
- Deliberations About Genomic Research and Biobanks With Citizens of the Chickasaw Nation.Frontiers in genetics · 2020Article
- Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review.Frontiers in genetics · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
Precision medicine initiatives, such as Cancer Breakthrough 2020, promise to improve cancer outcomes by tailoring treatment to an individual's genes, environment, and lifestyle. This promise will fall short unless researchers successfully engage diverse communities, including those with histories of medical and research abuse. We examined a rural Alaska Native community's viewpoints about biospecimen collection and storage; interest and recall in reporting family health history; and interest and engagement in biospecimen collection for conducting a genetic test for cancer. In 2014, four focus groups were held with 28 adult Alaska Native rural community members. Thematic analysis was performed after establishing a coding scheme by team consensus. Study participants shared interest in engaging in genetic cancer research and suggested ways to improve community engagement in research. These included transparency and continuous communication with researchers at all stages of the research, clear communication about the intent of the research, and that research and results take into consideration the community's needs. These suggestions may be beneficial for future efforts to expand precision medicine research in Alaska Native communities and similar, diverse populations.
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What OpenQuestion holds
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.