Blog by Working Party members Sassy Molyneux (left) and Vicki Marsh (right), KEMRI Wellcome Trust Research Programme, Kilifi, Kenya & Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine, Oxford University, UK.
Earlier this year, the Nuffield Council on Bioethics launched its report Children and Clinical Research: Ethical Issues. Children and young people are central not only to the report’s focus but to the way recommendations were developed. We were both members of the Working Party, and as part of our analysis we listened to hundreds of voices of children, young people and parents.
Nowhere is child health research needed more than in low-to-middle income countries, where children account for a relatively large proportion of the population and rates of illness and death are often high. While primarily focusing on research in the UK, the Nuffield report sets out to have international relevance.
Among the voices we listened to were 57 community members and secondary school students from Kilifi, a coastal town in Kenya. Voices from Kilifi have provided central insights into how adults and young people view research involving children in this setting.
For most, perceptions of the importance of research on child health and fears about the involvement of young children presented a major tension, resolvable only through careful communication to support informed, balanced and free decisions. Most argued that older children and young people should have a greater say in these decisions, best seen as a joint process involving children and their parents with researchers’ support. These shifts within consent processes for children call for greater ‘people skills’ in research teams, rather than increasing levels of documentation.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.