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  1. Awareness, experiences and perceptions regarding genetic testing and the return of genetic and genomics results in a hypothetical research context among patients in Uganda: a qualitative study.Joseph Ochieng, Betty Kwagala, John Barugahare, Marlo Möller & Keymanthri Moodley - forthcoming - Journal of Medical Ethics.
    BackgroundGenetic testing presents unique ethical challenges for research and clinical practice, particularly in low-resource settings. To address such challenges, context-specific understanding of ethical, legal and social issues is essential. Return of genetics and genomics research (GGR) results remains an unresolved yet topical issue particularly in African settings that lack appropriate regulation and guidelines. Despite the need to understand what is contextually acceptable, there is a paucity of empirical research and literature on what constitutes appropriate practice with respect to GGR.The study (...)
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  • Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.Abimbola M. Oladayo, Sydney Prochaska, Tamara Busch, Wasiu L. Adeyemo, Lord J. J. Gowans, Mekonen Eshete, Waheed Awotoye, Veronica Sule, Azeez Alade, Adebowale A. Adeyemo, Peter A. Mossey, Anya Prince, Jeffrey C. Murray & Azeez Butali - forthcoming - AJOB Empirical Bioethics.
    Background Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial (...)
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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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