Ten Years Later: Jesse Gelsinger’s Death and Human Subjects Protection
By Osagie K. Obasogie,
Bioethics Forum
| 10. 22. 2009
Last month marked the tenth anniversary of Jesse Gelsinger's death. While perhaps not quite a household name, Gelsinger is vividly remembered among many medical researchers. His death during a gene therapy clinical trial in September 1999 rocked the field like nothing else since the Tuskegee experiments. But sadly, the questionable research practices that led to Gelsinger's death have only become more troublesome in the past decade. Indeed, protections for clinical trial participants seem to be waning at the very moment they are needed most.
Gelsinger suffered from orinthine trascarbamlase deficiency (OTCD), a rare metabolic disorder that prevents the body from breaking down ammonia. Many children with OTCD die at a young age, but Gelsinger had a mild version and led a fairly normal life through medicine and a special diet. Since a single-gene defect is responsible for OTCD, researchers considered it a prime candidate for gene therapy, a still-experimental treatment that attempts to replace defective genes with normal ones.
Gene therapy was the embryonic stem cell research of the 1990s; its ability to cure was thought to be boundless and...
Related Articles
By Keith Casebonne and Jodi Beckstine [with CGS' Katie Hasson], Disability Deep Dive | 07.24.2025
In this episode of Disability Deep Dive, hosts Keith and Jodi explore the complex interplay between disability science, technology, and ethics with guest Katie Hasson, Associate Director at the Center for Genetics and Society. The conversation delves into...
By John H. Evans, Craig Callender, Neal K. Devaraj, Farren J. Isaacs, and Gregory E. Kaebnick, Issues in Science and Technology | 07.04.2025
The controversy around a ban on “mirror life” should lead to a more nuanced public conversation about how to manage the benefits and risks of precursor biotechnologies.
About five years ago, the five of us formed a discussion group to...
By Hannah Devlin, The Guardian | 07.05.2025
Scientists are just a few years from creating viable human sex cells in the lab, according to an internationally renowned pioneer of the field, who says the advance could open up biology-defying possibilities for reproduction.
Speaking to the Guardian, Prof...
By Annika Inampudi, Science | 07.10.2025
Before a baby in the United States reaches a few days old, doctors will run biochemical tests on a few drops of their blood to catch certain genetic diseases that need immediate care to prevent brain damage or other serious...