IFGeneRA Collaborative Centre ELSI Core

IFGeneRA 协作中心 ELSI 核心

• 批准号: 9386098
• 负责人: Jantina De Vries
• 金额: $ 2.42万
• 依托单位: UNIVERSITY OF CAPE TOWN
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/9386098
• 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; 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.

项目总结- IFGeneRA ELSI核心 IFGeneRA ELSI核心将成为H3 Africa联盟应对伦理问题的关键资源。 这是在H3非洲联盟的过程中出现的挑战。IFGeneRA ELSI核心将联合收割机 生物伦理学方面的重要专业知识，可用于进行文献检索和审查，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：制定最佳做法框架执行指南 我们将利用IFGeneRA ELSI中代表的重要伦理指导和政策起草经验 核心小组为H3非洲基因组学最佳实践框架制定实施指南 非洲的研究和生物库。 目标2：为伦理工作组主席提供研究援助 H3非洲道德工作组成功的一个关键瓶颈是其获得资源的机会有限， 人力进行文献检索，准备政策草案，并寻求相关的国际指导 证件为了减轻这一挑战，我们建议提供一个特设研究助理， 协助工作组完成这些任务。 目标3：与H3非洲项目就其面临的伦理挑战进行咨询 根据H3非洲伦理工作组的要求或与之讨论，我们将提供以下服务： 进行文献审查，并就H3非洲研究中出现的伦理挑战进行咨询。 目标4：支持新成立的H3非洲生物标本和数据访问委员会 在H3 Africa协调中心的指导下，我们将能够阐明任何伦理问题。 如有需要，在决定查阅资料要求是否适当时可能出现的挑战。 目标5：主办非洲基因组学研究结果反馈讲习班 根据我们的项目发现，我们将为H3非洲研究人员组织一个研讨会或会议， 非洲基因组学研究中个体遗传研究成果反馈的看法和经验 #21555;中心。