Community Engagement for H3Africa Biobanking Research: The Tygerberg Model

 描述（由申请人提供）：本项目旨在制定和实施一个过程，让泰格伯格医院的H3Africa生物库研究的潜在参与者参与制定H3Africa生物库的治理政策，并将该过程转化为其他H3Africa站点的可推广指南。它将分为两部分。第1部分旨在获得关键利益相关者对社区参与（CE）指南的意见，以告知生物库治理。这一目标将首先开发一个教育工具，用于整个H3非洲网络的生物库讨论。利用这一工具，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泰格伯格社区参与治理过程的看法。关键主题将从这些访谈中出现，这将巩固我们为更广泛的泰格贝格社区开发CE过程的方法。在本项目的第2部分，我们将开发CE过程，该过程由访谈中出现的主题以及国际基因组研究CE指导的最佳政策工作提供信息。非洲其他形式生物医学研究（如艾滋病毒研究）的CE指导经验研究、监测和评估CE指标的现有文献以及迄今为止在不同非洲环境中使用CE进行基因组生物库研究的有限经验。重要的是，它还将受到作为非洲哲学组成部分的Ubuntu原则的影响。这些研究活动的结果将与我们在当地采访中确定的关键原则相结合，并转化为一个示范CE过程，为其他H3非洲的工作提供实际指导。

 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.