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 Core IFGenera Elsi核心将是H3africa联盟回应道德的关键资源 在H3africa财团过程中出现的挑战。 Ifgenera Elsi核心将结合 可用于进行文学搜索和评论的生物伦理学的重要专业知识，协助 制定政策和准则，或咨询出现的特定道德挑战。 具体而言，Ifgenera核心的目的是： 目标1：为最佳实践框架制定实施指南 我们将使用Ifgenera Elsi中代表的重要道德指导和政策起草经验 为基因组学最佳实践的H3AFRICA框架制定实施指南的核心 非洲的研究和生物群。 目标2：向WG伦理主席提供研究帮助 H3africa道德工作组成功的关键瓶颈是其对资源的访问有限和 人力进行文学搜索者，准备政策草案并提供相关的国际指导 文件。为了减轻这一挑战，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：可以咨询有关他们面临的道德挑战的H3AFRICA项目 遵循H3africa道德工作组或与之讨论的请求，我们将可以使用 进行文献综述并咨询有关H3africa研究背景下出现的道德挑战。 AIM 4：支持新成立的H3africa Biospimens和数据访问委员会 从H3africa协调中心获得指导，我们将可以阐明任何道德 如果需要，则可能会出现挑战。 目标5：主持非洲基因组学研究结果反馈的研讨会 利用我们的项目调查结果，我们将组织一次研讨会或会议，供H3africa研究人员讨论 关于非洲基因组学研究结果的个人遗传研究结果反馈的观点和经验 中心的5。