Community Engagement for H3Africa Biobanking Research: The Tygerberg Model

 描述(由申请人提供)：该项目旨在开发和实施一个过程，让泰格伯格医院H3非洲生物库研究的潜在参与者参与制定H3非洲生物库的治理政策，并将该过程转化为其他H3非洲地点的通用指导方针。这件事将分两部分完成。第1部分的目的是获取关键利益相关者对社区参与(CE)指导方针的意见，以便为生物库管理提供信息。这一目标将首先开发一种教育工具，用于在整个H3非洲网络中讨论生物库。使用这一工具，我们将与主要利益相关者进行半结构化访谈，以确定他们对如何最好地让更广泛的Tygerberg社区参与治理过程的看法。关键主题将从这些访谈中浮现出来，这些主题将为我们为更广泛的泰格伯格社区开发CE流程的方法奠定基础。在这个项目的第二部分，我们将根据采访中出现的主题，通过关于CE指导国际基因组研究的最佳政策工作，来制定CE过程。关于CE对非洲其他形式的生物医学研究(如艾滋病毒研究)的指导的实证研究，关于监测和评估CE的指标的现有文献，以及迄今为止CE在不同非洲环境中进行基因组生物库研究的有限经验。重要的是，它还将受到Ubuntu原则的启发，这是非洲哲学的一个组成部分。这些研究活动的结果将根据我们在当地采访中确定的关键原则进行调整，并转化为示范CE进程，可以为其他H3非洲的努力提供实践指导。

 DESCRIPTION (provided by applicant): 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.