ArticleGenetics in medicine : official journal of the American College of Medical Genetics2022
Integration of stakeholder engagement from development to dissemination in genomic medicine research: Approaches and outcomes from the CSER Consortium.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed.
- Determinants of DNA-sequence-based Diagnostic Yield in the CSER Consortium.medRxiv : the preprint server for health sciences · 2026Article
- Incorporating polygenic risk scores and social determinants of health across populations: Considerations and best practices in research.American journal of human genetics · 2026Review
- A Community-Engaged Approach to Enhancing Participation in Genomic Research in Rare and Understudied Cancer Populations.International journal of environmental research and public health · 2025Article
- Optimizing participant and community engagement in cancer genomic sequencing research.Genetics in medicine : official journal of the American College of Medical Genetics · 2025Article
- A decade of public engagement regarding human germline gene editing: a systematic scoping review.European journal of human genetics : EJHG · 2025Article
- Integrating ELSI study teams in paediatric genomic research efforts.Nature reviews. Genetics · 2025Article
- When families bridge the research-clinical divide: An exploration of values regarding cascade screening in genomic research.Genetics in medicine open · 2025Article
- Employing effective recruitment and retention strategies to engage a diverse pediatric population in genomics research.American journal of human genetics · 2024Article
- Navigating the Genetic Frontier for the Integration of Genetic Services into African Healthcare Systems: A scoping review.Research square · 2024Article
- Participant-guided development of bilingual genomic educational infographics for Electronic Medical Records and Genomics Phase IV study.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Using visual storytelling to share aggregate findings with families participating in clinical genomics research.Genetics in medicine open · 2024Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project.Journal of community genetics · 2023Article
- Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.AJOB empirical bioethics · 2023Article
- Promoting patient engagement in cancer genomics research programs: An environmental scan.Frontiers in genetics · 2023Article
Corrections and comments
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Authors and funding
20 authors.
Funding
Abstract
purposeThere is a critical need for genomic medicine research that reflects and benefits socioeconomically and ancestrally diverse populations. However, disparities in research populations persist, highlighting that traditional study designs and materials may be insufficient or inaccessible to all groups. New approaches can be gained through collaborations with patient/community stakeholders. Although some benefits of stakeholder engagement are recognized, routine incorporation into the design and implementation of genomics research has yet to be realized.
methodsThe National Institutes of Health-funded Clinical Sequencing Evidence-Generating Research (CSER) consortium required stakeholder engagement as a dedicated project component. Each CSER project planned and carried out stakeholder engagement activities with differing goals and expected outcomes. Examples were curated from each project to highlight engagement strategies and outcomes throughout the research lifecycle from development through dissemination.
resultsProjects tailored strategies to individual study needs, logistical constraints, and other challenges. Lessons learned include starting early with engagement efforts across project stakeholder groups and planned flexibility to enable adaptations throughout the project lifecycle.
conclusionEach CSER project used more than 1 approach to engage with relevant stakeholders, resulting in numerous adaptations and tremendous value added throughout the full research lifecycle. Incorporation of community stakeholder insight improves the outcomes and relevance of genomic medicine research.
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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.