UCEER: Utah Center for Excellence in ELSI Research P20
Institution: University of Utah
FOA Number: RFA-HG-12-012
Abstract
The University of Utah Center for Excellence in ELSI Research (UCEER) will conduct strategic planning for ELSI research, training and mentoring, and conduct two pilot projects. The focus of the UCEER will be population screening for genetic conditions in the health care of women and children. Our specific focus will be prenatal genetic screening and newborn screening. We will build on our strengths and experience to develop a collaborative, transdisciplinary center for research and training in ELSI issues. Prenatal and newborn screening services impact millions of individuals annually and represent important elements in pediatric and obstetric health care. Specific Aim 1: Develop a Strategic Plan for Transdisciplinary/Trans-institutional Research a) We will organize and coordinate a transdisciplinary team of investigators and support staff across the collaborating institutions; and b) Develop a strategic plan for at least two R0I level projects that addresses cutting-edge ELSI issues in prenatal and newborn genetic screening. Specific Aim 2: Develop a Strategic Plan for a multidisciplinary ELSI Training and Mentoring a) Conduct a needs assessment of faculty and students at the University for education, training, and mentorship in ELSI issues. b) Develop a strategic plan for educational, training and mentoring opportunities. c) Develop a strategic plan for education and scholarship of students from regional underserved communities. Specific Aim 3: Pilot Studies a) To identify how aneuploidy screening information and choices are communicated to couples by providers b) Using the unique resources of the Utah Population Database, we will describe the rates of prenatal screening in the population of pregnant women in Utah. PUBLIC HEALTH RELEVANCE: This project will establish a Center of Excellence for research and training in the ethical, legal and social implications of genetic research. Our proposed focus is consistent with priorities established by the National Human Genome Research Institute.
FUNDING AGENCY:
Funder:
NIH
Institute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTE
Funding Type:
P20
Project Number:
P20HG007249
Start Date:
Jun 16, 2013
End Date:
May 31, 2016
PROJECT TERMS:
Aneuploidy; Child; Childhood; Communication; Communities; Complex; cost; cost effectiveness; Couples; design; Diagnostic; Discipline; Discipline of obstetrics; Education; education cost; Educational process of instructing; Ethics; experience; Faculty; fetal medicine; Focus Groups; Fostering; Funding; Genetic Counseling; Genetic Research; Genetic Screening; Genetic screening method; graduate student; Group Interviews; Health; Health Communication; health disparity; health literacy; Healthcare; Hereditary Disease; high risk; Hispanic Americans; Human Genetics; Indium; Individual; Infant; Informed Consent; Institution; Laboratories; Laws; legal implication; Medicine; member; Mentors; Mentorship; Methods; multidisciplinary; National Human Genome Research Institute; Native Americans; Needs Assessment; Neonatal Screening; new technology; Newborn Infant; next generation; Nursing Philosophy; Outcome; Parents; Pediatrics; Pilot Projects; Population; Population Database; Postdoctoral Fellow; Pregnant Women; prenatal; Process; programs; Provider; Public Health Nurses; Public Health Nursing; public health relevance; Research; Research Design; Research Personnel; Research Training; Resources; Scholarship; screening; Services; social implication; Staging; Strategic Planning; Students; Techniques; Testing; Time; TNFRSF5 gene; Training; Training and Education; United States; Universities; Utah; Woman; Work