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NIH Aug 13, 2019 | U24
ELSI.hub: National Center for ELSI Resources and Analysis
Institution: STANFORD UNIVERSITY
FOA Number: RFA-HG-18-008
Abstract
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
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
U24Project Number:
U24HG010733Start Date:
Aug 13, 2019End Date:
May 31, 2024PROJECT TERMS:
American, Awareness, base, Bioethics, Bioinformatics, Collaborations, Communication, Communities, community building, Congresses, Controlled Vocabulary, Data, data modeling, Development, Directories, Educational workshop, ethical legal social implication, Ethics, experience, Fostering, Funding, Future, Genetic, Genome, Genomics, Goals, Grant, Human Genetics, Humanities, indexing, Infrastructure, International, Journals, Knowledge, knowledge base, knowledge repository, Maps, Medical, Medical Genetics, medical schools, meetings, member, Mentors, Methods, Mission, National Human Genome Research Institute, Needs Assessment, newsletter, Ontology, outreach, Process, Production, programs, Reporting, Research, Research Personnel, Research Training, Resource Sharing, Resources, response, Scholarship, Scientist, Services, social media, Societies, Structure, symposium, tool, Training, translational genomics, Underrepresented Populations, Universities, web site, webinar, working group
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