Abstract
Perspectives on ethics, equity, and genomic data governance in Kenya: insights from the 2026 human genetics and genomics society of Kenya symposium
Nambati, E. A.
Njuguna, N.
Alimohamed, M. Z.
Azzam, B.
Mukwana, S.
Ariga, S.
Rugut, C.
Kirosh, N.
Githongo, S.
Uyoga, S.
Kimani, F.
Mashedi, O.
Githua, E.
Eyase, F.
Maina, M.
Mutuku, J.
Nzikali, D.
Mutugi, M.
Bulimo, W.
J Community Genet. 2026; 17
Permanent descriptor
https://doi.org/10.1007/s12687-026-00964-xBACKGROUND: Kenya is at a transitional point in advancing human genomics research and its applications particularly for non-communicable diseases. While there are foundational legal and institutional infrastructures in place there are still significant governance gaps that exist that need to be addressed before large-scale human genomic research, and genomic medicine can be implemented in a responsible manner. METHODS: This is a report on the perspectives gathered from symposium participants attending the 2nd Human Genetics and Genomics Society of Kenya (HGGSK) symposium, held during 16th KEMRI Annual Scientific and Health Conference. It draws on narrative/ descriptive synthesis of expert speaker presentations and a structured survey completed by symposium attendees to provide insight on ethics, equity, and genomic data governance in Kenya. RESULTS: Most respondents 13/23 (57%) perceived that Kenya is not yet adequately prepared for the implementation of large-scale human genomics research. The primary concerns were the need for stronger genetic privacy protections, robust informed consent processes, and a national genomics policy framework. A large majority of participants 19/23 (83%) emphasized the need to strengthen genetic privacy protection, while 12/23 (52%) preferred study-specific consent over broad consent for the future use of genomic data. Overall, participants identified the development of a national human genomics policy framework as the most urgent priority to support the responsible advancement of human genomics research and its clinical implementation in Kenya. CONCLUSIONS: Kenya has foundational structures for human genomics research but there is a need to develop governance frameworks that will guide responsible scaling.