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  1.  16
    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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  2.  17
    Mapping research ethics committees in Africa: Evidence of the growth of ethics review of health research in Africa.Boitumelo Mokgatla, Carel IJsselmuiden, Doug Wassenaar & Mary Kasule - 2017 - Developing World Bioethics 18 (4):341-348.
    Health research initiatives worldwide are growing in scope and complexity, particularly as they move into the developing world. Expanding health research activity in low- and middle-income countries has resulted in a commensurate rise in the need for sound ethical review structures and functions in the form of Research Ethics Committees. The urgent need for continued capacity development in Africa has necessitated research initiatives to identify existing capacity. This discussion paper describes the mapping of RECs in Africa through MARC project, second (...)
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  3.  4
    Understanding cultural values, norms and beliefs that may impact participation in genome‐editing related research: Perspectives of local communities in Botswana.Setlhomo Koloi-Keaikitse, Mary Kasule, Irene Kwape, Dudu Jankie, Dimpho Ralefala, Dolly Mogomotsi Ntseane & Gaonyadiwe George Mokone - forthcoming - Developing World Bioethics.
    Gene‐editing research is a complex science and foreign in most communities including Botswana. Adopting a qualitative deliberative framework with 109 participants from 7 selected ethnic communities in Botswana, we explored the perceptions of local communities on cultural values, norms, and beliefs that may motivate or deter likely participation in the use of gene‐editing related research. What emerged as the ethnic community's motivators for research participation include the potential for gene‐editing technologies to promote access to individualized medications, and the possibility of (...)
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  4.  9
    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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  5.  19
    The features and qualities of online training modules in research ethics: a case study evaluating their institutional application for the University of Botswana.Nancy E. Kass, Mary Kasule, Boikanyo Mokgweetsi, Kristina Hallez, Joseph Ali & Dolly Mogomotsi Ntseane - 2020 - Global Bioethics 31 (1):133-154.
    ABSTRACT Research ethics remains a cornerstone of the scientific enterprise as it defines the boundaries of responsible conduct of research. Our aim was to systematically identify, review and test online training courses in research ethics which could be considered most appropriate for future training at the University of Botswana (UB). We used an evaluative tool that included both descriptive and evaluative criteria for assessing the strengths, weaknesses and appropriateness of 10 online research ethics courses which are publicly accessible. We then (...)
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  6.  28
    The features and qualities of online training modules in research ethics: a case study evaluating their institutional application for the University of Botswana.Dolly Mogomotsi Ntseane, Joseph Ali, Kristina Hallez, Boikanyo Mokgweetsi, Mary Kasule & Nancy E. Kass - 2019 - Global Bioethics:1-22.
    Research ethics remains a cornerstone of the scientific enterprise as it defines the boundaries of responsible conduct of research. Our aim was to systematically identify, review and test online training courses in research ethics which could be considered most appropriate for future training at the University of Botswana. We used an evaluative tool that included both descriptive and evaluative criteria for assessing the strengths, weaknesses and appropriateness of 10 online research ethics courses which are publicly accessible. We then assembled Focus (...)
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  7.  10
    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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  8.  16
    Should Feedback of Individual Results be Integrated into the Consent Process in African Genomics? Participants’ Views from an HIV-TB Genomics Research Project in Botswana.Dimpho Ralefala, Mary Kasule, Ambroise Wonkam, Mogomotsi Matshaba & Jantina de Vries - 2022 - AJOB Empirical Bioethics 13 (1):48-56.