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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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  • Participant views on practical considerations for feedback of individual genetic research results: a case study from Botswana.Dimpho Ralefala, Mary Kasule, Olivia P. Matshabane, Ambroise Wonkam, Mogomotsi Matshaba & Jantina de Vries - 2023 - Global Bioethics 34 (1):1-14.
    Key to discussions around feedback of individual results from genomics research are practical questions on how such results should be fed back, by who and when. However, there has been virtually no work investigating these practical considerations for feedback of individual genetic results in the context of low-and middle-income countries (LMICs), especially in Africa. Consequently, we conducted deliberative focus group discussions with 6 groups of adolescents (n = 44) who previously participated in a genomics study in Botswana as well as (...)
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  • Survey on Using Ethical Principles in Environmental Field Research with Place-Based Communities.Dianne Quigley, Alana Levine, David A. Sonnenfeld, Phil Brown, Qing Tian & Xiaofan Wei - 2019 - Science and Engineering Ethics 25 (2):477-517.
    Researchers of the Northeast Ethics Education Partnership at Brown University sought to improve an understanding of the ethical challenges of field researchers with place-based communities in environmental studies/sciences and environmental health by disseminating a questionnaire which requested information about their ethical approaches to these researched communities. NEEP faculty sought to gain actual field guidance to improve research ethics and cultural competence training for graduate students and faculty in environmental sciences/studies. Some aspects of the ethical challenges in field studies are not (...)
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  • Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda.Harriet Nankya, Edward Wamala, Vincent Pius Alibu & John Barugahare - 2024 - BMC Medical Ethics 25 (1):1-13.
    Background Generally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR. Aim To assess the perspectives of genetics and genomics researchers in Uganda on CE (...)
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  • Defining and Negotiating the Social Value of Research in Public Health Facilities: Perceptions of Stakeholders in a Research‐Active Province of South Africa.Elizabeth Lutge, Catherine Slack & Douglas Wassenaar - 2017 - Bioethics 31 (2):128-135.
    This article reports on qualitative research conducted in KwaZulu-Natal, South Africa, among researchers and gate-keepers of health facilities in the province. Results suggest disparate but not irreconcilable perceptions of the social value of research in provincial health facilities. This study found that researchers tended to emphasize the contribution of research to the generation of knowledge and to the health of future patients while gate-keepers of health facilities tended to emphasize its contribution to the healthcare system and to current patients. Furthermore, (...)
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