Gene Therapy's Dark Ages

Gene therapy is based on a simple-sounding, yet deceptively complicated premise: adding or replacing faulty genes to fix medical problems. A compelling idea that came out of breakthroughs in DNA research, the field grew lightning fast. But the death of teenager Jesse Gelsinger after a gene therapy clinical trial left the public and scientists questioning the field's promise. 

Why did researchers push ahead with clinical trials despite gene therapy still being  in its infancy? What does the Jesse Gelsinger story tell us about the personal risk behind medical breakthroughs?

Credits

Host: Alexis Pedrick
Executive Producer: Mariel Carr
Producer: Rigoberto Hernandez
Associate Producer: Sarah Kaplan
Audio Engineer: Samia Bouzid
Music by Blue Dot Sessions

Resource List

American Experience: The Boy in the Bubble. PBS.

Begley, Sharon. "Out of Prison, the 'Father of Gene Therapy' Faces a Harsh Reality: a Tarnished Legacy and an Ankle Monitor." STAT News, July 23, 2018.

Cobb, Matthew. As Gods: A Moral History of the Genetic Age. New York: Basic Books, 2022.

"C‑SPAN: Paul Gelsinger." C‑SPAN.

Gelsinger, Paul L. "Jesse's Intent." Circare.

ABC Evening News. Vanderbilt Television News Archive, December 8, 1999.

CBS Evening News. Vanderbilt Television News Archive, May 28, 1999.

NBC Nightly News Broadcast. Vanderbilt Television News Archive, December 8, 1999.

"Report and Recommendations of the Panel to Assess the NIH Investment in Research on Gene Therapy." Georgetown University Library.

Rinde, Meir. "The Death of Jesse Gelsinger, 20 Years Later." Science History Institute, June 4, 2019.

Stolberg, Sheryl Gay. "The Biotech Death of Jesse Gelsinger." New York Times Magazine, November 28, 1999.

"Teen Dies Undergoing Experimental Gene Therapy." Washington Post, September 29, 1999.

"The Glimmering Promise of Gene Therapy." MIT Technology Review, November 1, 2006.

The NewsHour with Jim Lehrer, 1999-12-08. NewsHour Productions. American Archive of Public Broadcasting (GBH and the Library of Congress), Boston, MA and Washington, DC.

Wilson, James . "Lessons learned from the gene therapy trial for ornithine transcarbamylase deficiency."