Human Subjects Research: The Quest for Medical Justice for Patients and Families
Featuring Paul Gelsinger
Parent and Patient Advocate
Remote attendees may join via livestream.
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 also testifying before Congress. He has contributed to educational materials about OTC deficiency for the National Organization for Rare Disorders, and authored a publication describing his son’s experience. To reach a broader audience, he participated indocumentaries about gene therapy clinical trials, and continues to advocate for strengthening informed consent and human subject research protections.
Free and open to the public.
Coffee and refreshments will be provided.