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Community engagement in genetic research: The “slow code” of research ethics?

In Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. Martinus Nijhoff. pp. 181--197 (2003)

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  1. Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.Janet K. Shim, Nicole Foti, Emily Vasquez, Stephanie M. Fullerton, Michael Bentz, Melanie Jeske & Sandra Soo-Jin Lee - 2023 - AJOB Empirical Bioethics 14 (4):185-196.
    Background In 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.Methods Using 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.Results We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant (...)
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  • Prudentia Populo: Involving the Community in Biobank Governance.Megan A. Allyse, Jennifer B. McCormick & Richard R. Sharp - 2015 - American Journal of Bioethics 15 (9):1-3.
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