Friday, September 30
12–1 p.m. Paul Gelsinger presents the Dr. Robert Sostheim Medical Ethics Lecture*
Welcome by Robin Fretwell Wilson, Director, Institute of Government and Public Affairs, University of Illinois System & Mildred Van Voorhis Jones Chair in Law, University of Illinois College of Law
1–1:30 p.m. Questions & Dialogue
Join colleagues in person at Medical Sciences Building Auditorium (Room 274)
or Pollard Auditorium (Carle Forum)
or
Join us virtually via Zoom Call-in: go.illinois.edu/innovationgrandrounds
At the age of two, Paul Gelsinger’s son, Jesse, was diagnosed with ornithine transcarbamylase (OTC) deficiency, a rare genetic condition that causes ammonia to build up in the bloodstream. Thus began a life-changing journey for the whole family. In September 1999, 18-year-old Jesse Gelsinger traveled from his home in Tucson to participate in a clinical trial at the University of Pennsylvania. Jesse died after receiving an experimental gene therapy-based treatment in a phase 1 clinical trial for OTC deficiency.
To honor his son’s memory, Paul Gelsinger became a patient advocate, working since 2000 to change the gene-therapy research culture. He has given numerous presentations about his family’s experience to a wide range of audiences, including at many medical centers, legal and ethics conferences, and testifying before Congress. He has contributed to educational materials about OTC deficiency for the National Organization for Rare Disorders and has authored a publication describing his son’s experience. To reach a broader audience, he participated in documentaries about gene therapy clinical trials, and continues to advocate for strengthening informed consent and human subject research protections.
*Carle Illinois College of Medicine extends special thanks and appreciation to Dr. Sostheim for supporting this lecture. Dr. Sostheim was instrumental in developing the Carle Ethics Committee and served as committee chair. He also worked as a clinical assistant professor at the University of Illinois College of Medicine. He was the head of the ethics section of the internal medicine residency program at the college. The Sostheim Medical Ethics Lecture honors his legacy.
