ELSI Scale-Up: Large Sample Gene Discovery & Disclosure

ELSI 放大：大样本基因发现

• 批准号: 6831405
• 负责人: Donald B Bailey
• 金额: $ 21.46万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-09-01 至 2006-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6831405
• 关键词: behavioral /social science research tag; clinical research; confidentiality; ethics; genetic screening; health science research support; human genetic material tag; interdisciplinary collaboration; linkage mapping; mass screening; training

DESCRIPTION (provided by applicant): This proposal rests on the assumption that rapid expansion of large sample gene discovery and disclosure projects raise major ethical, legal, social, and policy challenges, to such an extent that it constitutes a significant and urgent public health need. Recognizing the urgency of these challenges, and drawing on three unique projects at UNC-CH involving large-sample gene discovery and disclosure, we request funding for a two-year Exploratory (P20) grant to conduct the planning necessary to create a Center of Excellence on ELSI Issues in Large Sample Gene Discovery and Disclosure. Our goal is to develop an infrastructure to maximize collaborative research, create partnerships with relevant constituencies, identify critical issues that must be addressed, and collect sufficient pilot data to propose a well-integrated center in which state-of-the-art ELSI research can be conducted to inform public policy. An interdisciplinary group of investigators at the University of North Carolina at Chapel Hill (UNC-CH), in partnership with key external partners, will engage in a range of activities to support five specific aims: (1) expand and strengthen an interdisciplinary team of investigators, creating an organizational structure to design and implement multi-disciplinary investigations of complex and rapidly emerging ELSI issues; (2) establish partnerships with key constituents to facilitate joint awareness of emerging ELSI issues in large sample studies, develop research collaboration, and identify effective mechanisms to disseminate research and influence policy and practice; (3) use three major projects to collect preliminary data in preparation for major research initiatives to be proposed as part of a forthcoming CEER application; (4) design a training component to enable the next generation of ELSI scholars, genome researchers, clinical and social scientists, and researchers in law, bioethics and the humanities to develop independent research programs that address important ELSI problems; and (5) fully develop a vision for a Center of Excellence application.

描述（由申请人提供）：该提案取决于以下假设：大型样本基因发现和披露项目的快速扩展引发了主要的道德，法律，社会和政策挑战，以至于它构成了巨大而紧急的公共健康需求。认识到这些挑战的紧迫性，并在涉及大型基因发现和披露的UNC-CH的三个独特项目中，我们要求为为期两年的探索（P20）赠款进行资金，以进行必要的计划，以创建一个卓越中心关于大型样本基因发现和披露中的ELSI问题。我们的目标是开发一个基础架构，以最大化协作研究，与相关选区建立伙伴关系，确定必须解决的关键问题，并收集足够的试验数据，以提出一个整合性的中心进行通知公共政策。北卡罗来纳大学教堂山分校（UNC-CH）的一个跨学科研究人员与关键外部合作伙伴合作，将进行一系列活动，以支持五个具体目标：（1）扩大和增强一个跨学科团队调查人员，建立了一个组织结构，以设计和实施复杂且迅速新兴的ELSI问题的多学科调查； （2）与关键成分建立合作伙伴关系，以促进大型样本研究中新兴的ELSI问题的共同认识，开发研究合作，并确定有效的机制，以传播研究和影响政策和实践； （3）使用三个主要项目来收集初步数据，以准备为即将推出的CEER应用程序的一部分提出的重大研究计划； （4）设计培训部分，以使下一代ELSI学者，基因组研究人员，临床和社会科学家以及法律，生物伦理学和人文学科的研究人员能够制定解决重要ELSI问题的独立研究计划； （5）充分建立卓越应用中心的愿景。