The Human Heredity and Health in Africa (H3Africa) Consortium is a pan-African network which seeks to develop capacity for health-related genomic research in Africa. Broad aims include:
- Facilitate training and collaborations that increase resource for conducting cutting-edge, genomics-based research in Africa.
- Support research that will serve as a vehicle for research training and improve research capacity of African laboratories.
- Support bioinformatics and biorepository capacity building.
With financial support from the Wellcome Trust and the US National Institutes of Health (NIH), the network currently involves eight collaborative research projects and 18 individual research projects carried out across several countries in sub-Saharan Africa, as well as four pilot biorepository research projects and a bioinformatics network. Most projects are investigating genetic and/or genomic susceptibility to specific diseases including trypanosomiasis, diabetes, HIV, tuberculosis, cardiometabolic disease, schizophrenia, cervical cancer and rheumatic heart disease. Projects typically involve the collection of human biological materials such as blood and urine which are used for primary research projects and also stored for future research purposes through biobanking.
Community engagement practices across the Consortium
The H3Africa Consortium has identified community engagement (CE) as one of the key issues that need to be addressed to support the successful implementation of genomic studies in Africa. Reasons for this included the recognition that genomic studies have implications not just for the individuals participating in these projects but also for their families and their wider communities, and the novelty of genomic research in the African context.
The consortium has a CE working group which has developed preliminary Guidelines on Community Engagement as well as programme-wide engagement activities and CE projects embedded within the individual projects. CE projects have included:
- Community meetings as in the TrypanoGEN Project
- Radio and television appearances
- Community representatives
- Community advisory board (CABs)
- Patient advocacy groups
- Theatre/ Drama
- Information leaflets
- Comic books as in the Genome Adventures project
- Pamphlets on genomics and biobanking
- Internet-based platform and mobile app as in the mGenAfrica project
- Social media (Facebook)
- Video on biobanking
Each of these projects has had a different engagement "audience" but most have been direct participants of research and their families. The aims of each engagement project have also differed. Some of the aims have included:
- To provide/exchange information about research with the target community
- To create awareness, educate and mobilise the community for research
- To promote health and research literacy
- To build trust and get community buy-in and support for research
- To consult specific communities of interest on aspects of the research projects
The Complexity of Engagement
Engaging populations with the H3Africa research has been complex for several reasons:
- Genomic research is complex by nature because it is not just about individuals but families and communities as well
- Genomics is complex and novel in the African context so fostering a lay understanding of genomics, human heredity and biobanking, is difficult
- The collaborative nature of the project means involving different partners with different and sometimes competing interests
- There are cultural sensitivities around blood sampling
- Limited ethical and regulatory frameworks for genomics and biobanking in Africa
Challenges of the Engagement
The Consortium met various challenges when implementing their engagement. An important reason for this was that engagement in the programme was added as an afterthought. Research was already underway, stakeholders and aims of engagement were not mapped at the programme and project start and no resource or dedicated engagement professionals were costed in to the programme. This led to a series of issues that were harder to resolve without staff and resource to do so:
1. Defining the target community
Many of the projects struggled to decide who to include in engagement beyond individual sample donors. The process of mapping stakeholders and their interests in order to know who should be engaged takes time and really requires dedicated personnel.
2. Identifying the ‘best’ methods for engagement
Time and expertise is needed to decide which methods best suit the research and engagement aims and the requirements of the specific community.
3. Meeting community expectations
Related to point 1, awareness of community expectation and management of those expectations requires meaningful partnership building, trust and collaboration which takes time.
There is an evolving understanding of the role of community engagement in genomics and going forwards H3 Africa's CE working group will be advocating for CE not as an afterthought but as an integral component of research to ensure it is done with the time and resource required to navigate its many complexities. The next round of H3 Africa funding will have CE firmly embedded in each project, learning form the mistakes made in the first five years.
"If you want to go first, go alone. If you want to go far, go together." - African Proverb
Caption: Vicky Nembaware, H3 Africa Coordinating Centre, South Africa (on behalf of Paulina Tindana Chair of H3Africa Community Engagement Working Group) presents the work of the H3Africa consortium.
The content on this page forms part of the online report for the 2017 International Engagement Workshop "It's Complicated: navigating scientific complexity in public and community engagement". To read more about complexity in genetics and genomics engagement visit the genetics and genomics theme from the workshop. To read more about the full workshop and access the rest of the report including video presentations, discussion summaries, and tools, visit the workshop page.
This work, unless stated otherwise, is licensed under a Creative Commons Attribution 4.0 International License