ArticleProgress in community health partnerships : research, education, and action2017
A Culture of Understanding: Reflections and Suggestions from a Genomics Research Community Board.
Article in Progress in community health partnerships : research, education, and action, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers.
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
30 citing papers in PubMed.
- Effects of Testing and Disclosing Ancestry-Specific Genetic Risk for Kidney Failure on Patients and Health Care Professionals: A Randomized Clinical Trial.JAMA network open · 2022Trial
- Comprehensive examination of the multilevel adverse risk and protective factors for cardiovascular disease among hypertensive African Americans.Journal of clinical hypertension (Greenwich, Conn.) · 2019Trial
- Recommendations for return of secondary genomic findings in observational cohort studies.Nature genetics · 2026Review
- Advancing the science of genomic learning healthcare systems.Learning health systems · 2025Article
- Primary Care Provider Perspectives on Expanded Genomic Screening in Children.Research square · 2025Article
- Article
- Employing effective recruitment and retention strategies to engage a diverse pediatric population in genomics research.American journal of human genetics · 2024Article
- Article
- What makes a good life: using theatrical performance to enhance communication about polygenic risk scores research in patient and public involvement.Journal of community genetics · 2023Article
- Co-creation and engagement in a DNA integrity cohort study.Journal of clinical and translational science · 2023Article
- Integration of stakeholder engagement from development to dissemination in genomic medicine research: Approaches and outcomes from the CSER Consortium.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Observational
- Strategies to Integrate Genomic Medicine into Clinical Care: Evidence from the IGNITE Network.Journal of personalized medicine · 2021Article
- Genomic Sequencing Results Disclosure in Diverse and Medically Underserved Populations: Themes, Challenges, and Strategies from the CSER Consortium.Journal of personalized medicine · 2021Article
- The GGLEAM Study: Understanding Glaucoma in the Ohio Amish.International journal of environmental research and public health · 2021Article
- Distribution of Genomic Testing Resources by Oncology Practice and Rurality: A Nationally Representative Study.JCO precision oncology · 2021Article
- Engaging community stakeholders in research on best practices for clinical genomic sequencing.Personalized medicine · 2020Article
- Genetic testing and results disclosure in diverse populations: what does it take?Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Participatory Genomic Testing Can Effectively Disseminate Cardiovascular Pharmacogenomics Concepts within Federally Qualified Health Centers: A Feasibility Study.Ethnicity & disease · 2020Article
- Successful recruitment and retention of diverse participants in a genomics clinical trial: a good invitation to a great party.Genetics in medicine : official journal of the American College of Medical 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
11 authors.
Funding
Abstract
There has been limited community engagement in the burgeoning field of genomics research. In the wake of a new discovery of genetic variants that increase the risk of kidney failure and are almost unique to people of African ancestry, community and clinical leaders in Harlem, New York, formed a community board to inform the direction of related research. The board advised all aspects of a study to assess the impact of testing for these genetic variants at primary care sites that serve diverse populations, including explaining genetic risk to participants. By reflecting on the board's experiences, we found that community voices can have tangible impact on research that navigates the controversial intersection of race, ancestry, and genomics by heightening vigilance, fostering clear communication between researchers and the community, and encouraging researchers to cede some control. Our reflections and work provide a strong justification for longitudinal community partnerships in genomics research.
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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.