ELSI Friday Forum

ELSI Friday Forum | October 9th, 2026 | 12PM ET/ 9AM PT via Zoom
What Do China’s Recent Gene Editing Deaths Mean for CRISPR Research?    

Moderator: Josephine Johnston LLB(hons), MBHL
Presenter: Holly Fernandez Lynch, JD, MBe, Françoise Baylis C.M., O.N.S, PhD, FRSC, FISC

In July and August 2026, news broke revealing that two young children in China had died in gene-editing trials over a year earlier. For clinicians, researchers, and ELSI scholars who have tracked gene-editing developments over the last several decades, the recent cases brought back uncomfortable memories of Jesse Gelsinger, the teenager who died in a gene therapy trial at the University of Pennsylvania in 1999. Much progress has been made in the gene-editing field since Gelsinger’s death, with cases like the successful treatment of Baby KJ raising the prospect of personalized, n-of-1 trials for children born with rare genetic diseases. The deaths in China were a stark reminder of how much work still needs to be done to make experimental gene therapies reliably safe and effective, as well as the need for close oversight and transparency in the push for progress. This ELSI Friday Forum will examine the recent gene-editing deaths and the questions that they raise for gene-editing clinical research more generally: What oversight was in place for the cases in China, and how does that system compare to other versions across the globe? Are the deaths isolated cases, or is there a more general trend that would suggest a wider problem–and what data are available to even assess the situation? How should these tragic losses and the risk of future deaths be weighed against the promise of gene therapies? This ELSI Friday Forum is the second in a series of ELSI sessions devoted to gene-editing therapies. Please join us also for the first session, on October 2, for an ELSIconversation with Art Caplan and Alison Bateman-House about the legacy and lessons of Jesse Gelsinger’s death.