This project aims to develop and implement a process for involving potential participants in H3Africa biobanking research at Tygerberg Hospital in the development of governance policies for the H3Africa biorepository, and to translate that process into a generalizable guideline for other H3Africa sites. It will be done ove two parts. Part 1 will aim to obtain key stakeholder views on a community engagement (CE) guideline to inform biobanking governance.
This aim will first develop an educational tool which will be used for discussions on biobanking throughout the H3Africa network. Using this tool, we will conduct semi-structured interviews with key stakeholders to ascertain their views on how best to involve the wider Tygerberg community in the governance process. Key themes will then emerge from these interviews which will underpin our approach to developing a CE process for the wider Tygerberg community. In Part 2 of this project, we will develop the CE process which is informed by the themes which emerged from the interviews, by the best policy work on CE guidance for genomic research internationally. empirical studies of CE guidance for other forms of biomedical research in Africa (such as HIV research), the existing literature on indicators for monitoring and evaluating CE and the limited experience to date with CE for genomic biobanking research in different African settings. Importantly, it will also be informed by the principle of Ubuntu, which is a component of African philosophy. The results of these research activities will be tempered with the key principles identified in our local interviews and translatd into a model CE process that can provide practical guidance for other H3Africa efforts.
This project is critical to the development of community engagement processes for genomic biobanking research. This process can then be used to engage communities in the development of biobanking policy and thus ensure any governance structures are informed and supported by the community.
| Staunton, Ciara; Tindana, Paulina; Hendricks, Melany et al. (2018) Rules of engagement: perspectives on stakeholder engagement for genomic biobanking research in South Africa. BMC Med Ethics 19:13 |
