Ethical issues of involving people with intellectual disabilities in genetic research in Kenya

Prof. Ilina Singh is co-leading this NIH Fogarty project with colleagues in Oxford and Kenya. In Oxford, the team includes Prof. Charles Newton, Dr Rosemary Musesengwa, and Dr Alexandra Almeida. In Kenya, the team includes Prof Eunice Kamaara, Prof Violet Naanyu, Dr Dorcas Kamuya, Dr Symon Kariuki, Dr Amina Abubakar, Dorothy Chepkirui, Patricia Kipkemoi, and Mary Bitta.

This project will contribute to understanding the ethical and social-cultural issues of involving people with intellectual disabilities (ID) in genetic research and cell line creation. The project operates within the Stanley Global Collections Initiative on Neuropsychiatric Genetics in African Populations (NeuroGAP) and is part of the NeuroDEV study on the genetics of childhood neurodevelopmental disorders.

Genetic research among individuals and families with ID in Africa presents distinctive ethical challenges. People with ID are considered a vulnerable population ethics guidelines support the involvement of vulnerable populations in research only under very specific considerations. These considerations include: the research must directly benefit the population, no other population is able to answer the research questions, and appropriate protection measures for their wellbeing are in place.

The NeuroDev study has met this ethical threshold for involving people with ID in health research. One of our first tasks is to examine what the broad ethics commitments noted above mean in practice. How do families, clinicians and research ethics committees in the local settings gather insights on the ethical and social-cultural considerations for involving people with neuropsychiatric disorders in genetic research? How do they make decisions about research participation and research conduct? Are these processes equitable, fair, and just? Few empirical studies have been conducted in Africa exploring the ethical dimensions of involving people with ID in genetic research.

The outputs of this study are targeted at scientists working in genomic research involving neuropsychiatric participants, institutional regulatory bodies, and policymakers in Africa. Findings are expected to strengthen the current ethical practices for the protection of the interests of participants with ID and affected communities. The outputs will be shared with relevant stakeholders to complement current ethical practices and applied in other fields of research within and beyond our colleagues at the Kenya Medical Research Institute – Centre for Geographic Medicine Research, Coast (KEMRI-CGMRC).