Given the unique health challenges in Africa and with increasing recognition of the high genetic diversity among African populations, genomic research and biobanking based in the region has grown substantially in recent years. Population-specific genomic and health research in Africa is key to developing appropriate and effective strategies to prevent and manage health conditions in the region.
The increase in African genomics research and biobanking is associated with a simultaneous rise in discussions about how to conduct such research ethically. There is a pressing need to develop minimum standards for genomic research that would help in the design and regulation of such research in Africa. The H3Africa Working Group on Ethics and Regulatory Issues facilitated the development of a Framework for Best Practice in Genomics Research and Biobanking in Africa which was published recently [1]. The full Framework is available on the H3Africa website [2].
The Framework places strong emphasis on African leadership or co-leadership in collaborative research, which would need to be substantive, meaningful and effective. Importantly, publication or other dissemination of research findings should take place with genuine and active intellectual participation of African investigators. Alongside this, to ensure the maximisation of the social value of research, the Framework recommends that all phases of the research process involve genuine community engagement.
Importantly, the Framework is premised on a communitarian or solidarity-based worldview held in many African countries. Within this worldview, responsible sharing of data and samples to contribute to the wellbeing and dignity of others would receive broad support. However, this should be matched with reciprocity. Within the context of research, this means that just as participants contribute to research, researchers are equally expected to recognise and respond to participants’ needs, particularly as they apply to the condition being investigated. This may include needs that could be addressed through the research project.
This focus on reciprocity as a guiding ethical value for African genomics and biobanking research also raises expectations about the return of individual research results. The Framework provides guidance and considerations regarding appropriate feedback of individual genetic research results in the African research context, and the H3Africa Consortium is further developing a policy in this regard.
The publication of the Framework and the associated article has raised considerable interest in the academic community [3]. Next steps in ensuring the adoption of the principles set out in the Framework include developing more detailed ethics guidelines for African genomics research and biobanking. Once developed, the guidelines will be available open access through the H3Africa website. This is expected to facilitate Africa-based genomic research which is respectful to the communities it is based in, and which maximises benefits to both Africa and the rest of the world.
References
1. Yakubu A, et al, Model framework for governance of genomic research and biobanking in Africa – a content description [version 1; referees: awaiting peer review]. AAS Open Res, 2018. 1(13). doi: 10.12688/aasopenres.12844.1
2. H3Africa Working Group on Ethics and Regulatory Issues, Ethics and Governance Framework for Best Practice in Genomic Research and Biobanking in Africa. (https://h3africa.org/9-news/361-framework-for-african-genomics-and-biobanking). Accessed 23 May 2018
3. Nature, A welcome framework for research in Africa. Nature, 2018. 556, 274. doi: 10.1038/d41586-018-04589-0 (https://www.nature.com/articles/d41586-018-04589-0). Accessed 23 May 2018