IFGeneRA Collaborative Centre ELSI Core

项目摘要-IFGeneRA ELSI核心 IFGeneRA ELSI核心将是H3非洲财团在应对伦理道德方面的关键资源 在H3非洲联盟的过程中出现的挑战。IFGeneRA ELSI核心将结合 生物伦理学方面的重要专业知识，可用于进行文献搜索和审查，协助 制定政策和指导方针，或就出现的特定道德挑战进行咨询。 具体地说，IFGeneRA核心旨在： 目标1：为最佳做法框架制定实施指南 我们将利用IFGeneRA ELSI所代表的重要道德指导和政策起草经验 CORE将为H3非洲基因组学最佳实践框架制定实施指南 在非洲进行研究和生物库建设。 目标2：向工作组伦理主席提供研究援助 H3非洲道德操守工作组取得成功的一个关键瓶颈是其获得资源和 进行文献搜索、编写政策草案和寻求相关国际指导的人力 文件。为了缓解这一挑战，我们建议提供一种特别的研究助理，它可以 协助工作组完成这些任务。 目标3：随时与H3非洲项目就他们面临的道德挑战进行咨询 根据H3非洲道德问题工作组的要求或与其讨论，我们将提供 就H3非洲研究中出现的伦理挑战进行文献回顾和咨询。 目标4：支持新成立的H3非洲生物圈和数据获取委员会 在H3非洲协调中心的指导下，我们将随时澄清任何道德问题 如有必要，在决定数据访问请求的适当性时可能出现的挑战。 目标5：主办一次关于非洲基因组研究成果反馈的研讨会 根据我们的项目成果，我们将组织一次研讨会或会议，供H3非洲研究人员讨论 对非洲基因组学研究中个体基因研究成果反馈的看法和体会 中心的BY5。

Project Summary – IFGeneRA ELSI Core The IFGeneRA ELSI Core will be a key resource for the H3Africa Consortium in responding to ethical challenges that emerge in the course of the H3Africa Consortium. The IFGeneRA ELSI Core will combine significant expertise in bioethics that can be used to conduct literature searches and reviews, assist in the development of policies and guidelines, or consult on particular ethical challenges that have emerged. Specifically, the IFGeneRA Core aims to: Aim 1: Develop an implementation guide for the Framework for Best Practice We will use the significant ethics guidance and policy drafting experience represented in the IFGeneRA ELSI Core to develop an implementation guide for the H3Africa Framework for Best Practice for Genomics Research and Biobanking in Africa. Aim 2: Provide research assistance to the Chair of the WG Ethics A key bottleneck in the success of the H3Africa Working Group on Ethics is its limited access to resources and manpower to conduct literature searchers, prepare policy drafts, and source relevant international guidance documents. To alleviate this challenge, we propose to make available an ad hoc research assistant that can assist the Working Group in these tasks. Aim 3: Be available to consult with H3Africa projects about ethical challenges they face Following requests by, or in discussion with, the H3Africa Working Group on Ethics, we will be available to conduct literature reviews and consult on ethical challenges that arise in the context of H3Africa research. Aim 4: Support the newly established H3Africa Biospecimens and Data Access Committee Taking guidance from the H3Africa Coordinating Centre, we will be available to elucidate any ethical challenges that may arise in deciding on the appropriateness of data access requests should that be required. Aim 5: Host a workshop on Feedback of Findings in Genomics Research in Africa Drawing on our project findings, we will organize a workshop or conference for H3Africa researchers to discuss views on and experiences of feedback of individual genetic research findings in genomics research in Africa in BY5 of the Centre.