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  1. ‘ It is a complex process, but it’s very important to return these results to participants’. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV.Sylvia Nabukenya, David Kyaddondo, Adelline Twimukye, Ian Guyton Munabi, Catriona Waitt & Erisa S. Mwaka - 2024 - Research Ethics 20 (2):363-387.
    This study aimed to explore stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV. A qualitative approach to investigation involved five focus group discussions with 30 Community representatives, 12 key informant interviews with researchers, and 12 in-depth interviews with research ethics committee members. In total, 54 stakeholders who were involved in pharmacogenomics research and HIV treatment and care contributed to the data collection between September 2021 and February 2022. The study explored five (...)
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  • Incidental Findings in Low‐Resource Settings.Haley K. Sullivan & Benjamin E. Berkman - 2018 - Hastings Center Report 48 (3):20-28.
    Much new global genetic research employs whole genome sequencing, which provides researchers with large amounts of data. The quantity of data has led to the generation and discovery of more incidental or secondary findings and to vigorous theoretical discussions about the ethical obligations that follow from these incidental findings. After a decade of debate in the genetic research community, there is a growing consensus that researchers should, at the very least, offer to return incidental findings that provide high‐impact, medically relevant (...)
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  • Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?Dimpho Ralefala, Mary Kasule, Ambroise Wonkam, Mogomotsi Matshaba & Jantina de Vries - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundA key ethical question in genomics research relates to whether individual genetic research results should be disclosed to research participants and if so, which results are to be disclosed, by whom and when. Whilst this issue has received only scarce attention in African bioethics discourse, the extension of genomics research to the African continent has brought it into sharp focus.MethodsIn this qualitative study, we examined the views of adolescents, parents and caregivers participating in a paediatric and adolescent HIV-TB genomic study (...)
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  • Feeding back of individual genetic results in Botswana: mapping opportunities and challenges.Mary Kasule, Mogomotsi Matshaba, Ambroise Wonkam & Jantina de Vries - 2023 - BMC Medical Ethics 24 (1):1-10.
    Purpose We explored the views of Botswana stakeholders involved in developing, implementing and applying ethical standards for return of individual study results from genomic research. This allowed for mapping opportunities and challenges regarding actionability requirements that determine whether individual genomic research results should be fed back. Methods Using in-depth interviews, this study explored the views of sixteen (16) stakeholders about the extent, nature and timing of feedback of individual genomic research findings, including incidental findings that arise in the context of (...)
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  • Differences in Conceptual Understanding of the “Actionability” of Incidental Findings and the Resultant Difference in Ethical Responsibility: An Empirical Study in Japan.Tomohide Ibuki, Keiichiro Yamamoto & Kenji Matsui - 2020 - AJOB Empirical Bioethics 11 (3):187-194.
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  • Ethical issues in global neuroimaging genetics collaborations.Andrea Palk, Judy Illes, Paul Thompson & D. Stein - 2020 - NeuroImage 117208 (221):1-10.
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