Community Engagement for H3Africa Biobanking Research: The Tygerberg Model

H3Africa 生物银行研究的社区参与：Tygerberg 模型

基本信息

批准号：
9319775
负责人：
Keymanthri Moodley
金额：
$ 3.93万
依托单位：
STELLENBOSCH UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2015
资助国家：
美国
起止时间：
2015-04-01 至 2019-09-30
项目状态：
已结题

项目摘要

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.

描述（由申请人提供）：该项目旨在开发和实施一个流程，让 Tygerberg 医院 H3Africa 生物样本库研究的潜在参与者参与制定 H3Africa 生物样本库的治理政策，并将该流程转化为其他 H3Africa 的通用指南第 1 部分旨在获取主要利益相关者对社区参与 (CE) 指南的看法，以告知生物样本库治理这一目标。将首先开发一个教育工具，用于在整个 H3Africa 网络中讨论生物样本库。使用该工具，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。然后，关键主题将从这些访谈中浮现出来，这将支撑我们为更广泛的 Tygerberg 社区开发 CE 流程的方法，在该项目的第 2 部分中，我们将根据访谈中出现的主题来开发 CE 流程。国际上关于基因组研究的 CE 指导的最佳政策工作，对非洲其他形式的生物医学研究（例如艾滋病毒研究）的 CE 指导的实证研究，关于监测和评估 CE 指标的现有文献以及迄今为止 CE 的有限经验。重要的是，它还将受到 Ubuntu 原则的影响，这是非洲哲学的一部分。这些研究活动的结果将根据我们在当地采访和翻译中确定的关键原则进行调整。进入模型CE 流程可以为其他 H3Africa 工作提供实用指导。