ArticleAJOB empirical bioethics2023
Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.
Article in AJOB empirical bioethics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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
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Who cites it
8 citing papers in PubMed.
- From equity to solidarity: how care and relationality transform the debate on justice in genomics.Journal of community genetics · 2026Article
- Cultivating Authentic Partnership: Cooperative Development of a Toolkit to Mitigate Group Harm in Biorepository-Enabled Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Advancing global dementia research through equity and inclusion.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?The American journal of bioethics : AJOB · 2025Article
- A qualitative study of diversity in precision medicine research: The development and stakeholder assessment of a Diversity Decision Map.Journal of clinical and translational science · 2025Article
- Key contextual factors involved with participation in medical and genomic screening and research for African American and White Americans: a qualitative inquiry.Journal of community genetics · 2024Article
- Review
- Innovating for a Just and Equitable Future in Genomic and Precision Medicine Research.The American journal of bioethics : AJOB · 2023Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
backgroundIn the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.
methodsUsing interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.
resultsWe find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability.
conclusionsUpstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in "pantomime community engagement." This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process.
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Registered trials
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