What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda

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dc.contributor.authorRutakumwa, Rwamahe
dc.contributor.authorVries, Jantina de
dc.contributor.authorParker, Michael
dc.contributor.authorTindana, Paulina
dc.contributor.authorMweemba, Oliver
dc.contributor.authorSeeley, Janet
dc.date.accessioned2022-08-28T11:19:52Z
dc.date.available2022-08-28T11:19:52Z
dc.date.issued2020
dc.description.abstractPrevious 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 committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study.en_US
dc.identifier.citationRwamahe Rutakumwa, Jantina de Vries, Michael Parker, Paulina Tindana, Oliver Mweemba & Janet Seeley (2020) What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda, Global Bioethics, 31:1, 169-183, DOI: 10.1080/11287462.2019.1592867en_US
dc.identifier.urihttps://doi.org/10.1080/11287462.2019.1592867
dc.identifier.urihttps://nru.uncst.go.ug/handle/123456789/4467
dc.language.isoenen_US
dc.publisherGlobal Bioethicsen_US
dc.subjectConsenten_US
dc.subjectFeedbacken_US
dc.subjectGenomic researchen_US
dc.subjectAfricaen_US
dc.subjectStakeholder engagementen_US
dc.titleWhat constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Ugandaen_US
dc.typeArticleen_US
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