The H3Africa Consortium identified community engagement (CE) as one of the key issues that needed to be addressed to support the successful implementation of genomic studies in Africa.
An initial project was commissioned in 2014 to review the literature and to map CE activities across the H3A consortium. This was followed by a CE workshop in Zambia on 8th May 2015. Participants of the workshop included investigators involved in community engagement activities in the H3A projects as well as facilitators with extensive experiences and expertise in community engagement in Africa. One of the main conclusions of this workshop was the need to establish a platform to encourage H3Africa research projects to learn and share best practices of community engagement strategies and to work towards identifying effective CE models that can support genomic studies on the continent.
Given global interests in the role of CE in genomic studies and biobanking research, the plan was not to limit these discussions to just H3Africa but to include other CE experts in Africa to enhance opportunities for cross-learning.
The H3Africa Community Engagement Working Group (CEWG) was established in 2015 to:
1) support the H3A projects with their CE activities
2) provide opportunities for cross-learning across the H3A consortium
3) evaluate ongoing CE strategies to determine their effectiveness and
4) develop key recommendations to inform community engagement activities in future genomic studies and biobanks.
Membership is drawn from interested members of the Ethics and Regulatory Issues working group, CE focal persons of H3A projects and H3A ELSI projects. The principal investigators of each H3A project are responsible for nominating a member of their team to represent them on the WG.
To encourage opportunities for cross-learning, the CEWG has also extended membership invitations to non-H3A CE experts in Africa such as the Global Health Bioethics Network (GHBN) and the Global Forum on Bioethics in Research (GFBR). These external members are people who are not directly working with an H3A project or research institution affiliated with the H3A consortium. Such external (non-H3Africa) members can join freely in all conversations of the Working Group and should particularly be invited to share their views or experiences on topics of their expertise. They can also take credit for any significant contributions they make to the working group (i.e. authorship in manuscripts and reports).
- Improved understanding of genomic studies across the research sites of the H3A consortium
- Documentation of evidence-based examples of different CE strategies and the challenges and strengths in each approach (through the use of empirical methods)
- Shared H3A CE experiences with the global community through international conferences
- Articles on H3A CE experiences and biobanking research to be published in peer-review journals
- An edited ‘book’ of narratives on H3Africa CE activities
- Online training modules/webinars in collaboration with the H3Africa CC and other working groups
The H3A Ethics and CE working group (ECEWG) has developed preliminary Guidelines on Community Engagement to support CE activities in H3Africa projects and has also conducted a systematic review and mapping exercise on CE experiences across the Consortium. The current focus of the working group is on evaluating CE in the context of genomics and biobanking.
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