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  1. Use of Broad Consent and Related Procedures in Genomics Research: Perspectives From Research Participants in the Genetics of Rheumatic Heart Disease Study in a University Teaching Hospital in Zambia.Oliver Mweemba, John Musuku, Bongani M. Mayosi, Michael Parker, Rwamahe Rutakumwa, Janet Seeley, Paulina Tindana & Jantina De Vries - forthcoming - Global Bioethics:1-16.
    ABSTRACTThe use of broad consent for genomics research raises important ethical questions for the conduct of genomics research, including relating to its acceptability to research participants and...
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  • Challenges in Biobank Governance in Sub-Saharan Africa.Ciara Staunton & Keymanthri Moodley - 2013 - BMC Medical Ethics 14 (1):35.
    Biological sample and data transfer within and out of Africa is steeped in controversy With the H3Africa project now aiming to establish biobanks in Africa, it is essential that there are ethical and legal governance structures in place to oversee the operation of these biobanks. Such governance is essential to ensuring that donors are protected, that cultural perspectives are respected and that researchers have a ready availability of ethically sourced biological samples.
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  • “The Keeping is the Problem”: A Qualitative Study of IRB-Member Perspectives in Botswana on the Collection, Use, and Storage of Human Biological Samples for Research.Francis Barchi, Keikantse Matlhagela, Nicola Jones, Poloko M. Kebaabetswe & Jon F. Merz - 2015 - BMC Medical Ethics 16 (1):1-11.
    BackgroundConcurrent with efforts to establish national and regional biorepositories in Africa is widespread endorsement of ethics committees as stewards of the interests of individual donors and their communities. To date, ethics training programs for IRB members in Botswana have focused on ethical principles and international guidelines rather than on the ethical dimensions of specific medical technologies and research methodologies. Little is known about the knowledge and concerns of current and prospective IRB members in Botswana with respect to export, reuse, storage, (...)
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  • “It’s all about trust”: reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.Keymanthri Moodley & Shenuka Singh - 2016 - BMC Medical Ethics 17 (1):57.
    Biobanks are precariously situated at the intersection of science, genetics, genomics, society, ethics, the law and politics. This multi-disciplinarity has given rise to a new discourse in health research involving diverse stakeholders. Each stakeholder is embedded in a unique context and articulates his/her biobanking activities differently. To researchers, biobanks carry enormous transformative potential in terms of advancing scientific discovery and knowledge. However, in the context of power asymmetries in Africa and a distrust in science born out of historical exploitation, researchers (...)
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  • “It's My Blood”: Ethical Complexities in the Use, Storage and Export of Biological Samples: Perspectives From South African Research Participants.Keymanthri Moodley, Nomathemba Sibanda, Kelsey February & Theresa Rossouw - 2014 - BMC Medical Ethics 15 (1):4.
    The use of biological samples in research raises a number of ethical issues in relation to consent, storage, export, benefit sharing and re-use of samples. Participant perspectives have been explored in North America and Europe, with only a few studies reported in Africa. The amount of research being conducted in Africa is growing exponentially with volumes of biological samples being exported from the African continent. In order to investigate the perspectives of African research participants, we conducted a study at research (...)
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  • Ethical Issues in the Export, Storage and Reuse of Human Biological Samples in Biomedical Research: Perspectives of Key Stakeholders in Ghana and Kenya.Paulina Tindana, Catherine S. Molyneux, Susan Bull & Michael Parker - 2014 - BMC Medical Ethics 15 (1):76.
    For many decades, access to human biological samples, such as cells, tissues, organs, blood, and sub-cellular materials such as DNA, for use in biomedical research, has been central in understanding the nature and transmission of diseases across the globe. However, the limitations of current ethical and regulatory frameworks in sub-Saharan Africa to govern the collection, export, storage and reuse of these samples have resulted in inconsistencies in practice and a number of ethical concerns for sample donors, researchers and research ethics (...)
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