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.
The University of Utah Center for Excellence in ELSI research explores issues relevant to population testing and screening for genetic conditions in the healthcare of women and children, as well as ELSI issues arising from testing and screening in the broader family context and responses to disabilities identified through genetic technologies. The Center supports cores in research, education and career advancement, and administration.