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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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  • Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study.Nabukenya Sylvia, Ochieng Joseph, Kaawa-Mafigiri David, Munabi Ian, Nakigudde Janet, Nakwagala Frederick Nelson, Barugahare John, Kwagala Betty, Ibingira Charles, Twimwijukye Adelline, Sewankambo Nelson & Mwaka Erisa Sabakaki - 2022 - Research Ethics 18 (3):193-209.
    Research Ethics, Volume 18, Issue 3, Page 193-209, July 2022. This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to (...)
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  • “You would not be in a hurry to go back home”: patients’ willingness to participate in HIV/AIDS clinical trials at a clinical and research facility in Kampala, Uganda.Deborah Ekusai Sebatta, Godfrey Siu, Henry W. Nabeta, Godwin Anguzu, Stephen Walimbwa, Mohammed Lamorde, Badru Bukenya & Andrew Kambugu - 2020 - BMC Medical Ethics 21 (1):1-14.
    BackgroundFew studies have examined factors associated with willingness of people living with HIV to participate in HIV treatment clinical trials in Sub-Saharan Africa. We assessed the factors associated with participation of PLHIV in HIV treatment clinical trials research at a large urban clinical and research facility in Uganda.MethodsA mixed methods study was conducted at the Infectious Diseases Institute, adult HIV clinic between July 2016 and January 2017. Data were collected using structured questionnaires, focused group discussions with respondents categorised as either (...)
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  • Standard of care for social harms in HIV prevention trials: A South African perspective.Takshita Sookan, Ganzamungu Zihindula & Douglas Wassenaar - 2020 - Developing World Bioethics 20 (4):194-199.
    BackgroundThe prevention of HIV remains an ongoing global concern. The safety and welfare of participants in these trials are imperative. Research Ethics Committees (RECs) review all reports of serious adverse events, adverse events and social harms arising in the course of such trials. There is little guidance for RECs on how to respond appropriately to social harm reports.MethodologyThis paper reviews the literature on social harms in HIV prevention trials and offers suggestions for RECs on how to respond appropriately to such (...)
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