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.
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