ELSI Scale-Up: Large Sample Gene Discovery & Disclosure

ELSI 放大：大样本基因发现

基本信息

批准号：
7273900
负责人：
Donald B Bailey
金额：
$ 24.47万
依托单位：
UNIV OF NORTH CAROLINA CHAPEL HILL
依托单位国家：
美国
项目类别：
财政年份：
2004
资助国家：
美国
起止时间：
2004-09-01 至 2008-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7273900
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

项目摘要

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）：该提案基于这样的假设：大样本基因发现和披露项目的快速扩展引发了重大的伦理、法律、社会和政策挑战，以至于构成了重大而紧迫的公共卫生需求。认识到这些挑战的紧迫性，并利用 UNC-CH 涉及大样本基因发现和披露的三个独特项目，我们请求提供为期两年的探索性 (P20) 拨款，以进行创建卓越中心所需的规划关于大样本基因发现和披露中的 ELSI 问题。我们的目旨在为公共政策提供信息。北卡罗来纳大学教堂山分校 (UNC-CH) 的一个跨学科研究小组将与主要外部合作伙伴合作，开展一系列活动，以支持五个具体目标：(1) 扩大和加强由以下人员组成的跨学科团队：调查人员，创建一个组织结构来设计和实施对复杂且快速出现的 ELSI 问题的多学科调查； (2) 与主要成员建立伙伴关系，以促进对大样本研究中新出现的 ELSI 问题的共同认识，发展研究合作，并确定传播研究和影响政策和实践的有效机制； (3) 利用三个主要项目收集初步数据，为即将提出的 CEER 申请的一部分提出的重大研究举措做准备； (4) 设计培训内容，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开发解决重要 ELSI 问题的独立研究计划； (5) 全面制定卓越中心应用程序的愿景。