Jesse's Intent: The Importance of Informed Consent & Clinical Trial Oversight

Event Details

Genetics & Genomics Grand Rounds
September 19, 2018 - 4:00 pm
MRB 102

Presenter Details

Paul L. Gelsinger
Parent and Patient Advocate

Watch Mr. Gelsinger's Talk

Speaker Biograpgy

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 in documentaries about gene therapy clinical trials, and continues to advocate for strengthening informed consent and human subject research protections.

Mr. Gelsinger will touch on his personal experiences, and review the evolution of gene therapy, the real and potential conflicts of interest in clinical research, and the awareness of these issues – or not – by research participants.


Continuing Medical Education Credit

Continuing Medical Education (CME) credit is being offered for 2018 - 2019 Genetics and Genomics Grand Rounds series through the University of Arizona College of Medicine - Tucson.

The University of Arizona College of Medicine – Tucson is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

The University of Arizona College of Medicine – Tucson designates this live activity for a maximum of 1 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

2018 - 2019 Genetics and Genomics Grand Rounds Learning Objectives

  1. Integrate advances in genetic diagnosis and treatment into the day-to-day practices of research and clinical care.
  2. Order appropriate diagnostic evaluations for patients with hereditary medical conditions.

All Faculty, CME Planning Committee Members, and the CME Office Reviewers have disclosed that they do not have any relevant financial relationships with commercial interests that would constitute a conflict of interest concerning this CME activity.

Presented By

Contact Info

For more information, please contact: 

Barbara Kahn-Sales at