ELSI.hub: National Center for ELSI Resources and Analysis

ELSI.hub：国家 ELSI 资源和分析中心

• 批准号: 10165779
• 负责人: Mildred K. Cho
• 金额: $ 148.36万
• 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/10165779
• 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

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，其使命是提高 ELSI社区和其他利益相关者对ELSI研究的生产和使用。的目标 ELSI.hub将作为资源共享和社区建设的场所，以提高生产， 分享和利用遗传学和基因组学的伦理、法律的和社会影响方面的研究成果（ELSI 研究），使用“知识转化为行动”的概念框架，该框架强调了知识转化为行动的促进因素和障碍， 知识共享和使用。ELSI.hub将遵循响应性，包容性， 适应性、严谨性、透明度和开放获取。它将建立对社区需求的反应能力， 以ELSI研究人员为重点，并将NHGRI和利益相关者的投入纳入优先服务。ELSI.hub 将通过建立个人和机构联系，包括ELSI研究的广泛利益相关者， 征求意见、促进贡献和加强传播。我们的团队带来了二十多年来 在ELSI研究和转化基因组学中吸引广泛利益相关者的经验， NHGRI资助的倡议直接侧重于ELSI的研究和培训，包括两个国家中心， 在ELSI研究卓越（CEER）和T32培训补助金在道德，法律的和社会影响的 遗传学和基因组学研究。我们的团队得到了斯坦福大学的机构支持， 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处。具体 ELSI.hub的目标是： ·目标1：创建一个平台，以识别、收集、索引和分享ELSI研究产品 ·目标2：提供关于关键主题的ELSI研究的策展和综合的分析功能，以及 映射ELSI字段 ·目标3：召集具有相关专门知识的广泛利益攸关方， 中心资源，并解决基因组学研究中新出现的ELSI问题 ·目标4：参与外联、传播和培训，以支持促进和发展 和使用ELSI.hub资源