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

犹他大学 ELSI 研究卓越中心 (UCEER)

• 批准号: 10474367
• 负责人: ERIN ROTHWELL
• 金额: $ 99.13万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-05-16 至 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10474367
• 关键词: Address; Advisory Committees; Affect; Award; Cancer Center Planning Grant; Career Mobility; Characteristics; Child; Communication; Communication Tools; Communities; Companions; Decision Making; Development; Disabled Children; Discipline; Discipline of obstetrics; Education; Educational Activities; Educational Assessment; Faculty; Family; Family Relationship; Forensic Medicine; Funding; Genetic; Genetic Counseling; Genetic Diseases; Genetic Screening; Grant; Healthcare; Individual; Informed Consent; Institution; Laws; Leadership; Legal; Link; Mentors; Mentorship; National Human Genome Research Institute; Neonatal Screening; Nursing Philosophy; Pediatrics; Policies; Population; Population Scientist Supplement (R25); Postdoctoral Fellow; Process; Productivity; Public Health Nursing; Research; Research Activity; Research Personnel; Research Project Grants; Resources; Schedule; Screening procedure; Structure; Students; Testing; Treatment Effectiveness; United States National Institutes of Health; Universities; Utah; Woman; Work; career; career development; carrier testing; college; cost effectiveness; disability; education cost; ethical legal social implication; experience; family support; father role; genetic technology; genetic testing; graduate student; health communication; health disparity; health literacy; implementation science; legal implication; meetings; member; patient screening; policy implication; population based; prenatal testing; programs; response; screening; screening services; social; social implication; undergraduate student

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.

项目摘要 本申请是为ELSI研究的犹他州卓越中心的资金更新 （UCEER）。我们的中心已收到资金下的P20赠款从2014 - 2016年和根据 2016 - 2020年RM 1补助金。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非常强调 新生儿筛查、产前筛查和携带者筛查。对于此次更新，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，以及法律的/政策 问题.此外，我们建议处理以人口为基础的文物测试所引起的问题 直接给消费者基因检测公司。我们建议保持一系列强有力的努力， 涉及来自广泛学科的教师和学生，从本科到 博士后水平。UCEER获得了NHGRI的R25奖，与我们的RM 1资金挂钩， 支持那些有残疾的本科生和研究生。UCEER拥有 建立了一个有效的行政结构和程序，并建立了一个强大的工作人员队伍， 支持我们的研究和教育计划。