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  1. Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.Janet Seeley, Emily B. Wong, Mark J. Siedner, Olivier Koole, Dickman Gareta, Resign Gunda, Dumsani Gumede, Nothando Ngwenya & Manono Luthuli - 2022 - BMC Medical Ethics 23 (1):1-11.
    BackgroundLimited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa.MethodsSemi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that (...)
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  • Editorial – ethical practice and genomic research.Michael Parker & Janet Seeley - 2020 - Global Bioethics 31 (1):164-168.
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  • Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study.Erisa Sabakaki Mwaka, Deborah Ekusai Sebatta, Joseph Ochieng, Ian Guyton Munabi, Godfrey Bagenda, Deborah Ainembabazi & David Kaawa-Mafigiri - 2021 - Global Bioethics 32 (1):15-33.
    Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers’ perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to (...)
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  • Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.Gershim Asiki, Michele Ramsay, Anita Ghansah, Paulina Tindana, Catherine Kyobutungi, Shukri F. Mohamed & Isaac Kisiangani - 2022 - BMC Medical Ethics 23 (1):1-11.
    BackgroundA fundamental ethical challenge in conducting genomics research is the question of what and how individual level genetic findings and aggregate genomic results should be conveyed to research participants and communities. This is within the context of minimal guidance, policies, and experiences, particularly in Africa. The aim of this study was to explore the perspectives of key stakeholders' on returning genomics research results to participants in Kenya.MethodsThis qualitative study involved focus group discussions (FGDs) and in-depth interviews (IDIs) with 69 stakeholders. (...)
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