PROJECT NARRATIVE 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.
PROJECT NARRATIVE The sickle cell trait (SCT) screening program of the National Collegiate Athletic Association (NCAA) is regarded as one of the largest mandated genetic screening programs in the United States (US). Estimates suggest that over 2,000 NCAA Division I student-athletes with SCT will be identified under the screening policy and that, without intervention, about seven NCAA Division I student-athletes would die suddenly from a complication of SCT over a 10-year period.
PROJECT NARRATIVE The sickle cell trait (SCT) screening program of the National Collegiate Athletic Association (NCAA) is regarded as one of the largest mandated genetic screening programs in the United States (US). Estimates suggest that over 2,000 NCAA Division I student-athletes with SCT will be identified under the screening policy and that, without intervention, about seven NCAA Division I student-athletes would die suddenly from a complication of SCT over a 10-year period.
PROJECT NARRATIVE The proposed study will use surveys and in-depth interviews from National Collegiate Athletic Association (NCAA) athletes and their parents to determine the extent and nature of parental involvement sickle cell trait (SCT) screening. This project will assess whether parental characteristics predict differences in athletes' decisions to receive or opt out of SCT screening.
Prenatal screening and testing technologies using genetic methods are rapidly expanding, offering increasing amounts of genetic information about the fetus. However, research shows that women from underserved populations are less likely to receive or accept prenatal genetic services, leading to discordant birth outcomes. We propose to explore the barriers to access and acceptance of prenatal genetic care among women from underserved populations.
PROJECT NARRATIVE The goal of this study is to study the effect of an evidence-based communication tool to support patients? decision-making about noninvasive prenatal genetic testing, by focusing on the communication that takes place in the clinical encounter.
PROJECT NARRATIVE Preparation is often cited as a reason for offering and for accepting prenatal genetic screening and diagnosis. However, this term has no clear definition, and thus it is impossible either to prove benefit or to recommend best practices.
PROJECT NARRATIVE The goal of this study is to study the effect of COVID-19 on prenatal healthcare delivery, specifically patients' ability to access prenatal genetic screening and diagnostic tests in an informed and evidence- based fashion. By doing so, we will identify whether serious short term health issues for women, children, and families are resulting from the pandemic and develop readily-deployable and scalable solutions to ensure women's informed access to high-quality prenatal care during future public health crises.
Project Narrative. Advances in psychiatric, neurologic and behavioral (PNB) genetics have brought the prospect of predictive and diagnostic genomic testing for many PNB conditions closer to clinical application. The potential for such findings to profoundly affect core elements of personhood?including identity, perceived responsibilities, and life trajectories?makes it essential to understand the impact of such information on individuals and families.