University of Utah Center of Excellence in ELSI research (UCEER)

项目概要 本申请旨在为犹他州 ELSI 研究卓越中心续订资助 （UCEER）。我们的中心在 2014 年至 2016 年期间获得了 P20 赠款和 2016 年至 2020 年提供 RM1 拨款。UCEER 主要关注基于人口的 ELSI 问题 基因检测和筛查。对于当前的融资周期，UCEER 非常重视 新生儿筛查、产前筛查和携带者筛查。对于本次更新，我们建议 将这一重点扩展到解决遗传残疾问题，包括成本效益 家庭和社区内的治疗、适应和支持以及法律/政策 问题。此外，我们建议解决基于人群的遗产测试所产生的问题 直接向消费者基因检测公司提供。我们建议保持一系列强有力的努力 让来自广泛学科的教师和从本科生到学生的学生参与进来 博士后级别。 UCEER 已获得 NHGRI 颁发的 R25 奖项，与我们的 RM1 资金挂钩， 支持有残疾的本科生和研究生。 UCEER 有 建立了高效的行政结构和流程以及强大的员工队伍 支持我们的研究和教育计划。

PROJECT SUMMARY This application is for renewal of funding for the Utah Center of Excellence in ELSI Research (UCEER). Our Center has received funding under a P20 grant from 2014 – 2016 and under an RM1 grant from 2016 – 2020. UCEER is primarily focused on ELSI issues in population-based genetic testing and screening. For the current funding cycle, UCEER has had a strong emphasis on newborn screening, prenatal screening and carrier screening. For this renewal, we propose extending this focus to also address issues with genetic disabilities, including cost- effectiveness of treatments, adaptation and support within families and the community, and legal/policy issues. In addition, we propose to address issues arising from population-based heritage testing by direct to consumer genetic testing companies. We propose to maintain a robust set of efforts to involve faculty from a broad range of disciplines and students from the undergraduate to post-doc levels. UCEER has received a R25 award from NHGRI, linked to our RM1 funding, that supports undergraduate and graduate students who identify with a disability. UCEER has developed an efficient administrative structure and processes and a strong group of staff to support our research and educational programs.