Benefit Sharing for Human Genomics Research: Awareness and Expectations of Genomics Researchers in Sub‐Saharan Africa

In: Ethics & human research: E&HR : a publication of the Hastings Center, Band 42, Heft 6, S. 14-20

Abstract

ABSTRACTBenefit sharing is an ethical issue that underscores the need to find a balance between access to genetic resources and the provision of fair benefits in exchange for access. The Human Genome Organisation (HUGO) is one of the few initiatives to have engaged with the topic of benefit sharing in human genomics. However, there is a lack of clarity on what benefit sharing entails in human genomics research and how it could be implemented in practice. This paper reports on a qualitative study that explored the views and expectations of benefit sharing by a group of genomics researchers in sub‐Saharan Africa. Overall, while there was little awareness of benefit sharing among the researchers, there was support for benefit sharing in human genetics, and this was based on principles of fairness, solidarity, and reciprocity. This in‐depth explorative study demonstrates the need for genomics research consortia in Africa to have open discussions on benefit sharing and to develop ethics frameworks for benefit sharing in population genomics studies in Africa. HUGO's statement on benefit sharing and the Nagoya Protocol could provide guidance.