The Lived Experiences Subgroup, part of the Working Group on Pediatric Gene Therapy and Medical Ethics (PGTME) at NYU Langone, works to place the stories and perspectives of patients and their families at the center of discussion about gene therapy research. Lived experience refers to how people make decisions and think about gene therapy research and how they articulate the emotional, social, ethical, and equity trade-offs that impact their lives and illness experience. This encompasses a range of scenarios, including engaging in, considering, declining, and desiring gene therapy research opportunities, among others.

We are dedicated to furthering research, education, and policy about ethical issues in pediatric gene therapy research from the vantage point of people who live through encounters with emerging gene therapy technologies. The Lived Experiences Subgroup is chaired by PGTME member Jennifer deSante-Bertkau, MD. Other members include the following.

Sarah Fadem, PhD

Dr. Fadem is a postdoctoral fellow in the Department of Pediatrics at Robert Wood Johnson Medical School. After receiving her master's in integrated product design from the University of Pennsylvania, she earned her doctorate in health communication and practical theory from Rutgers University. Her research integrates participatory design and sensemaking methodologies to understand the ways that patients and families come to understand and navigate complex medical situations.