IFGeneRA Collaborative Centre ELSI Core

IFGeneRA 协作中心 ELSI 核心

• 批准号: 10198975
• 负责人: Jantina De Vries
• 金额: $ 6.51万
• 依托单位: UNIVERSITY OF CAPE TOWN
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-20 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10198975
• 关键词: Africa; African; Bioethics; Bioethics Consultants; Collaborations; Communication; Consult; Data; Educational workshop; Ensure; Ethics; Event; Face; Feedback; Funding; Genetic Research; Genomics; Guidelines; Human Resources; Individual; International; Literature; Policies; Research; Research Assistant; Research Personnel; Resources; Review Literature; Services; Source; Work; biobank; data access; development policy; ethical legal social implication; experience; member; success; symposium; working group

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.

项目摘要 – IFGeneRA ELSI 核心 IFGeneRA ELSI 核心将成为 H3Africa 联盟响应道德问题的关键资源 IFGeneRA ELSI 核心将结合 H3Africa 联盟过程中出现的挑战。 生物伦理学方面的重要专业知识可用于进行文献检索和评论，协助 制定政策和准则，或就出现的特定道德挑战进行咨询。 具体来说，IFGeneRA 核心旨在： 目标 1：制定最佳实践框架实施指南 我们将利用 IFGeneRA ELSI 中所代表的重要道德指导和政策起草经验 为 H3Africa 基因组学最佳实践框架制定实施指南的核心 非洲的研究和生物银行。 目标 2：为道德工作组主席提供研究援助 H3Africa 道德工作组成功的一个关键瓶颈是其获取资源和服务的机会有限。 人力进行文献检索、准备政策草案并获取相关国际指导 为了缓解这一挑战，我们建议提供一名临时研究助理，可以 协助工作组完成这些任务。 目标 3：能够就 H3Africa 项目面临的道德挑战进行咨询 根据 H3Africa 道德工作组的要求或与 H3Africa 道德工作组讨论，我们将可以 对 H3Africa 研究中出现的伦理挑战进行文献综述和咨询。 目标 4：支持新成立的 H3Africa 生物样本和数据访问委员会 根据 H3Africa 协调中心的指导，我们将能够阐明任何道德问题 如果需要的话，在决定数据访问请求的适当性时可能会出现挑战。 目标 5：举办非洲基因组学研究结果反馈研讨会 根据我们的项目研究结果，我们将为 H3Africa 研究人员组织一次研讨会或会议来讨论 非洲基因组学研究中个体基因研究结果反馈的看法和经验 中心的 BY5。