This application is to fund the University of Utah Center of Excellence in ELSI Research (UCEER). The University of Utah has a strong tradition in human genetics and ELSI research and this proposal will build on our successful development and management of a P20 funded CEER. The proposed UCEER will focus primarily, although not exclusively, on issues relevant to population screening for genetic conditions in the healthcare of women, children, and young families. Our primary emphasis will be on enhancing education and informed decision-making by patients and research participants with innovative approaches including multi-media and interactive computer platforms. Our overall goal is to create a laboratory for research and education with a diverse set of scholars and ideas in a creative, supportive academic environment. The CEER will support faculty across 6 colleges at the University of Utah including Medicine, Law, Nursing, Humanities, Engineering, and Fine Arts. Through our Research Core, we propose funding for 6 Tier I research projects that are of sufficient size and rigor to warrant publication but also will serve as pilot projects or future NIH grant applications. Through our Education and Career Advancement Core, we will support a variety of ELSI educational activities from across the spectrum from undergraduates to junior faculty and provide a strong mentorship program to foster the next generation of ELSI scholars. The UCEER Administrative Core will support an effective structure for the support, oversight, and integration of the research and educational activities across the University. Our proposed administrative structure includes strong, experienced leadership, communication tools, effective space, functional meeting schedules, and an advisory committee that will engage our CEER leadership, faculty, and trainees.

Public Health Relevance

The proposal will fund a University of Utah Center for Excellence in ELSI research. The Center will support cores in research, education and career advancement, and administration. The primary focus of research will be population-based genetic screening.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project with Complex Structure (RM1)
Project #
1RM1HG009037-01
Application #
9111395
Study Section
Special Emphasis Panel (ZHG1)
Program Officer
Lockhart, Nicole C
Project Start
2016-05-16
Project End
2020-04-30
Budget Start
2016-05-16
Budget End
2017-04-30
Support Year
1
Fiscal Year
2016
Total Cost
Indirect Cost
Name
University of Utah
Department
Pediatrics
Type
Schools of Medicine
DUNS #
009095365
City
Salt Lake City
State
UT
Country
United States
Zip Code
84112
Dyer, J; Latendresse, G; Cole, E et al. (2018) Content of First Prenatal Visits. Matern Child Health J 22:679-684
Lamb, Brandy; Johnson, Erin; Francis, Leslie et al. (2018) Pre-implantation genetic testing: decisional factors to accept or decline among in vitro fertilization patients. J Assist Reprod Genet 35:1605-1612
Rothwell, Erin; Botkin, Jeffrey R; Cheek-O'Donnell, Sydney et al. (2018) An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research. AJOB Empir Bioeth 9:69-76
Rothwell, Erin; Johnson, Erin; Mathiesen, Amber et al. (2017) Experiences among Women with Positive Prenatal Expanded Carrier Screening Results. J Genet Couns 26:690-696
Rothwell, Erin; Goldenberg, Aaron; Johnson, Erin et al. (2017) An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots. J Empir Res Hum Res Ethics 12:335-342
Rothwell, Erin; Wong, Bob; Johnson, Erin et al. (2017) Education for fathers about newborn screening and leftover dried blood spots. J Community Genet 8:239-241
Botkin, Jeffrey R; Francis, Leslie P; Rose, Nancy C (2017) Concerns About Justification for Fetal Genome Sequencing. Am J Bioeth 17:23-25
Holton, Avery E; Canary, Heather E; Wong, Bob (2017) Business and Breakthrough: Framing (Expanded) Genetic Carrier Screening for the Public. Health Commun 32:1051-1058
Botkin, Jeffrey R (2016) Ethical issues in pediatric genetic testing and screening. Curr Opin Pediatr 28:700-704