What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda
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Date
2020
Journal Title
Journal ISSN
Volume Title
Publisher
Global Bioethics
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 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.
Description
Keywords
Consent, Feedback, Genomic research, Africa, Stakeholder engagement
Citation
Rwamahe 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: 10.1080/11287462.2019.1592867