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  1. (1 other version)What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda.Rwamahe Rutakumwa, Jantina de Vries, Michael Parker, Paulina Tindana, Oliver Mweemba & Janet Seeley - 2020 - Global Bioethics 31 (1):169-183.
    ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics (...)
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  • Ethical issues in genomic research: Proposing guiding principles co-produced with stakeholders.D. Carrieri, L. Jackson, C. Bewshea, B. Prainsack, J. Mansfield, T. Ahmad, N. Hawkins & S. Kelly - 2018 - Clinical Ethics 13 (4):194-198.
    Ethical guidance for genomic research is increasingly sought and perceived to be necessary. Although there are pressing ethical issues in genomic research – concerning for example the recruitment of patients/participants; the process of taking consent; data sharing; and returning results to patients/participants – there is still limited useful guidance available for researchers/clinicians or for the research ethics committees who review such projects. This report outlines the ethical principles and guidance for genomic research co-produced with stakeholders during two workshops which took (...)
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