ELSI.hub: National Center for ELSI Resources and Analysis

ELSI.hub：国家 ELSI 资源和分析中心

• 批准号: 10409725
• 负责人: Mildred K. Cho
• 金额: $ 152.92万
• 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 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10409725
• 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; 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; Research Training; Resource Sharing; Resources; Scholarship; Scientist; Services; Societies; Structure; Training; Underrepresented Populations; Universities; base; community building; data modeling; ethical legal social implication; experience; indexing; knowledge base; knowledge repository; medical schools; meetings; member; outreach; programs; response; 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ELSI资源和分析中心)是斯坦福大学、 哥伦比亚大学以及黑斯廷斯中心和哈佛大学的合作伙伴，他们的使命是增强 ELSI社区和其他利益相关者对ELSI研究的制作和使用。的目标是 ELSI.Hub将作为资源共享和社区建设的场所，以提高产量， 分享和使用关于遗传学和基因组学(ELSI)的伦理、法律和社会影响的研究 研究)，使用“知识转化为行动”的概念框架，强调促进者和障碍 知识共享和使用。ELSI.Hub将遵循响应、包容、 适应性、严格性、透明度和开放获取。它将建立对社区需求的响应能力， 重点关注ELSI研究人员，并结合NHGRI和利益相关者的意见来确定服务的优先顺序。ELSI.hub 将包括ELSI研究的广泛利益相关者，通过建立个人和机构联系 征求意见，促进贡献，加强传播。我们的团队带来了二十多年的 在广泛的利益相关者参与ELSI研究和翻译基因组学方面的经验 NHGRI资助的倡议直接侧重于ELSI研究和培训，包括两个国家中心 卓越的ELSI研究(CEER)和T32培训助学金，涉及道德、法律和社会影响 遗传学和基因组研究。斯坦福大学的机构支持进一步加强了我们的团队 生物医学伦理中心，国际知名的生物信息学专业知识和强大的基础设施，以及 哥伦比亚大学医学人文与伦理学系伦理学部。具体的 ELSI.Hub的目标是： ·目标1：创建一个识别、收集、索引和共享ELSI研究产品的平台 ·目标2：提供关于关键专题的ELSI研究的整理和综合的分析功能 映射ELSI字段 ·目标3：召集具有相关专业知识的广泛利益攸关方为发展作出贡献 ELSI.Hub资源和解决新出现的关于基因组研究的ELSI问题 ·目标4：参与外联、传播和培训，以支持对发展的贡献和发展 和使用ELSI.Hub资源