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.  How did the field grow so quickly? Why did ethical blunders leave it in the dark ages for so many years? And what does this tell us about the role of regulation? 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: <a href= "https://www.sciencehistory.org/profile/alexis-j-pedrick">Alexis Pedrick</a> Executive Producer: <a href= "https://www.sciencehistory.org/profile/mariel-carr">Mariel Carr</a> Producer: <a href= "https://www.sciencehistory.org/profile/rigoberto-hernandez">Rigoberto Hernandez</a> Associate Producer: <a href= "https://www.sciencehistory.org/profile/sarah-kaplan/">Sarah Kaplan</a> Audio Engineer: <a href="https://samiabouzid.com/" target= "_blank" rel="noreferrer noopener">Samia Bouzid</a> Music by <a href="https://www.sessions.blue/" target= "_blank" rel="noreferrer noopener">Blue Dot Sessions</a> Resource List <a href= "https://www.pbs.org/wgbh/americanexperience/films/boy-bubble/" target="_blank" rel="noreferrer noopener">American Experience: The Boy in the Bubble</a>. PBS. Begley, Sharon. “<a href= "https://www.statnews.com/2018/07/23/w-french-anderson-father-of-gene-therapy/" target="_blank" rel="noreferrer noopener">Out of Prison, the ‘Father of Gene Therapy’ Faces a Harsh Reality: a Tarnished Legacy and an Ankle Monitor</a>.” STAT News, July 23, 2018. Cobb, Matthew. <a href= "https://www.hachettebookgroup.com/titles/matthew-cobb/as-gods/9781541602854/?lens=basic-books" target="_blank" rel="noreferrer noopener">As Gods: A Moral History of the Genetic Age</a>. New York: Basic Books, 2022. “<a href="https://www.c-span.org/person/paul-gelsinger/82439/" target="_blank" rel="noreferrer noopener">C‑SPAN: Paul Gelsinge</a><a href= "https://www.c-span.org/person/paul-gelsinger/82439/">r</a>.” C‑SPAN. Gelsinger, Paul L. “<a href="https://www.circare.org/jintent.pdf" target="_blank" rel="noreferrer noopener">Jesse’s Intent</a>.” Circare. <a href="https://tvnews.vanderbilt.edu/broadcasts/184547" target="_blank" rel="noreferrer noopener">ABC Evening News</a>. Vanderbilt Television News Archive, December 8, 1999. <a href="https://tvnews.vanderbilt.edu/broadcasts/277385" target="_blank" rel="noreferrer noopener">CBS Evening News</a>. Vanderbilt Television News Archive, May 28, 1999. <a href="https://tvnews.vanderbilt.edu/broadcasts/628447" target="_blank" rel="noreferrer noopener">NBC Nightly News Broadcast</a>. Vanderbilt Television News Archive, December 8, 1999. “<a href= "https://repository.library.georgetown.edu/handle/10822/528491" target="_blank" rel="noreferrer noopener">Report and Recommendations of the Panel to Assess the NIH Investment in Research on Gene Therapy</a>.” Georgetown University Library. Rinde, Meir. “<a href= "https://www.sciencehistory.org/stories/magazine/the-death-of-jesse-gelsinger-20-years-later/" target="_blank" rel="noreferrer noopener">The Death of Jesse Gelsinger, 20 Years Later</a>.” Science History Institute, June 4, 2019. Stolberg, Sheryl Gay. “<a href= "https://www.nytimes.com/1999/11/28/magazine/the-biotech-death-of-jesse-gelsinger.html" target="_blank" rel="noreferrer noopener">The Biotech Death of Jesse Gelsinger</a>.” New York Times Magazine, November 28, 1999. “<a href= "https://www.washingtonpost.com/wp-srv/WPcap/1999-09/29/060r-092999-idx.html" target="_blank" rel="noreferrer noopener">Teen Dies Undergoing Experimental Gene Therapy</a>.” Washington Post, September 29, 1999. “<a href= "https://www.technologyreview.com/2006/11/01/227582/the-glimmering-promise-of-gene-therapy/" target="_blank" rel="noreferrer noopener">The Glimmering Promise of Gene Therapy</a>.” MIT Technology Review, November 1, 2006. <a href= "https://americanarchive.org/catalog/cpb-aacip-507-sj19k46n3m" target="_blank" rel="noreferrer noopener">The NewsHour with Jim Lehrer, 1999-12-08</a>. NewsHour Productions. American Archive of Public Broadcasting (GBH and the Library of Congress), Boston, MA and Washington, DC. Wilson, James . “<a href= "https://www.sciencedirect.com/science/article/pii/S109671920800499X" target="_blank" rel="noreferrer noopener">Lessons learned from the gene therapy trial for ornithine transcarbamylase deficiency</a>.”

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