Perspectives of Research Ethics Committees on the Challenges of Human Genomic Research Participation in Ethiopia

Abstract

Human Genomic Research (HGR) has contributed to public health advancement by identifying disease susceptibility and resistance. However, HGR is surrounded by several ethical, legal, and societal concerns. This qualitative research study explored the perspectives of REC members in Ethiopia on the ethical challenges of HGR. Two focus group discussions consisting of nine REC members were conducted on November 24, 2022, and March 22, 2023. A thematic analysis was conducted using MAXQDA Analysis Software. The study highlighted several important ELSIs related to HGR, including the inadequacy of HGR literacy at all levels: research participants, researchers, and RECs; unsatisfactory quality of consent; the vulnerability of HGR participants; and the lack of a legal framework to govern the acquisition, storage, use, and sharing of genomic data. Therefore, improving HGR literacy at all levels and introducing a legal framework to govern the protection of research participants of HGR is urgently needed.

Keywords

Human genomic research informed consent legal framework research ethics committees

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