ELSI.hub: National Center for ELSI Resources and Analysis

ELSI.hub：国家 ELSI 资源和分析中心

• 批准号: 10681216
• 负责人: Mildred K. Cho
• 金额: $ 147.89万
• 依托单位: STANFORD UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-08-13 至 2025-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10681216
• 关键词: Address; American; Awareness; Bioethics; Bioinformatics; Collaborations; Communication; Communities; Congresses; Controlled Vocabulary; Data; Development; Directories; Educational workshop; Ethics; Fostering; Funding; Future; Genetic; Genome; Genomics; Goals; Grant; Human Genetics; Humanities; Infrastructure; Institution; International; Journals; Knowledge; Maps; Medical; Medical Genetics; Mentors; Methods; Mission; National Human Genome Research Institute; Needs Assessment; Newsletter; Ontology; Process; Production; Reporting; Research; Research Personnel; Resource Sharing; Resources; Scholarship; Scientist; Services; Societies; Structure; Training; Underrepresented Populations; Universities; base; community building; data modeling; ethical, legal, and social implication; experience; indexing; knowledge base; knowledge repository; legal implication; medical schools; meetings; member; outreach; programs; response; social implication; social media; symposium; tool; translational genomics; web site; webinar; working group

ELSI.hub (a National Center for ELSI Resources and Analysis) is a collaboration between Stanford University, Columbia University and partners at the Hastings Center and Harvard University, whose mission is to enhance the production and use of ELSI research by the ELSI community and other stakeholders. The goal of ELSI.hub is to serve as a locus for resource sharing and community building to enhance the production, sharing, and use of research on the ethical, legal, and social implications of genetics and genomics (ELSI research), using the “knowledge to action” conceptual framework which highlights facilitators of and barriers to knowledge sharing and use. ELSI.hub will be guided by the principles of responsiveness, inclusion, adaptability, rigor, transparency, and open access. It will build in responsiveness to community needs, focusing on ELSI researchers, and incorporating NHGRI and stakeholder input to prioritize services. ELSI.hub will include a broad range of stakeholders of ELSI research by making personal and institutional connections to solicit input, facilitate contribution and enhance dissemination. Our team brings over two decades of experience in engaging a broad range of stakeholders in ELSI research and translational genomics through NHGRI-funded initiatives focused directly on ELSI research and training, including two national Centers for Excellence in ELSI Research (CEER) and a T32 Training Grant in the Ethical, Legal and Social Implications of Genetics and Genomics Research. Our team is further strengthened by the institutional support of the Stanford Center for Biomedical Ethics, internationally-known bioinformatics expertise and robust infrastructure, and the Division of Ethics in the Department of Medical Humanities and Ethics at Columbia University. The specific aims of ELSI.hub are: · Aim 1: Create a platform to identify, collect, index and share ELSI research products · Aim 2: Provide analytic functions of curation and synthesis of ELSI research on key topics, and mapping the ELSI field · Aim 3: Convene a broad base of stakeholders with relevant expertise to contribute to the development of ELSI.hub resources and to address emerging ELSI questions on genomics research · Aim 4: Engage in outreach, dissemination and training to support the contribution to and development and use of ELSI.hub resources

Elsi.hub（国家资源与分析中心）是斯坦福大学之间的合作 哥伦比亚大学和黑斯廷斯中央和哈佛大学的合作伙伴，其任务是增强 ELSI社区和其他利益相关者的Elsi研究的生产和使用 Elsi.hub将作为资源共享和社区建设的一个轨迹，以增强生产， 分享和使用有关遗传学和基因组学道德，法律和社会含义的研究（ELSI） 研究），使用“知识来行动”概念框架，该概念框架突出了促进者和障碍 知识共享和使​​用。 适应性，严谨，透明和开放访问将建立对社区需求的响应 专注于ELSI研究人员，并将NHGRI和利益相关者的意见纳入优先级 将通过建立个人和临床联系来包括ELSI研究的各种利益相关者 征求意见，促进贡献并增强我们的团队。 通过通过ELSI研究和转化基因组学参与广泛的利益相关者的经验 NHGRI资助的计划直接关注ELSI研究和培训，倾向于两个民族 ELSI研究（CEER）的卓越和T32培训赠款 遗传学和基因组学研究得到了斯坦福大学的铭文支持 生物医学伦理，国际知名的生物信息学专业知识和强大的基础设施的中心 哥伦比亚大学医学人文与伦理学系的道德科。 elsi.hub的目的是： ·目标1：创建一个平台来识别，收集，索引和共享ELSI研究产品 ·目标2：提供有关关键主题的ELSI研究的策划和合成的分析功能， 映射Elsi字段 ·目标3：召集与相关专业知识的广泛利益相关者以贡献发展 Elsi.hub资源的添加，并添加有关基因组学研究的新兴ELSI问题 ·目标4：从事外展，传播和培训以支持对和发展的贡献 并使用elsi.hub资源