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.
PUBLIC HEALTH RELEVANCE: This project will explore the ethical, social, and cultural issues of the American Indians in regards to genetic research. Engaging tribal leaders and relevant stakeholders such as scientists, clinicians, and policy makers on issues around genetic research will create a more complete understanding of these challenges and enable them to create policies that may permit greater participation by American Indians and their tribes.
Christensen and colleagues developed a survey to enable parents of pediatric patients to set preferences for return of individual results from research on pediatric biobank samples based on disease preventability and severity.The survey also enables participants to exclude mental health, developmental, childhood degenerative, and adult-onset disorders. During the course of this study, participants also reviewed a hypothetical results report with conditions divided into categories based on preventability and severity and were offered the opportunity to revise their preferences.
- Read more about Utah Center of Excellence in Ethical, Legal and Social Implications Research (UCEER)
Erin Rothwell, James Tabery, and Jeff Botkin were Principal Investigators of the Utah Center of Excellence in Ethical, Legal and Social Implications Research (UCEER) at the University of Utah in Salt Lake City, UT, USA. UCEER supported research and teaching of issues relevant to population screening for genetic conditions in the healthcare of women and children. UCEER operated from 2016 - 2024.
