Community Engagement for H3Africa Biobanking Research: The Tygerberg Model

Principal Investigator:

Scientific Description:

This project aims to develop and implement a process for involving potential participants in the governance of a biobank at Tygerberg Hospital. The study will be conducted in two parts. Part 1 will 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 that is informed by themes that emerged from the interviews conducted in part 1 of this study and from empirical studies of CE guidance for other forms of biomedical research in Africa (such as HIV research). It will also be informed by best policy work on CE guidance for genomic research internationally, the limited experience to date with CE for genomic biobanking research in different African settings and the existing literature on indicators for monitoring and evaluating CE. Importantly, it will also be informed by the principle of Ubuntu, an important concept in African philosophy. The results of these research activities will be tempered with the key principles identified in our local interviews and translated into a model CE process that can provide practical guidance for other H3Africa efforts.

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