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 Sarah Mervosh, The New York Times | 02.17.2019
A Minnesota man was eating a hot dog at a hockey game when, the authorities said, he wiped his mouth with a napkin and tossed the remains in the trash.
It was the moment cold-case investigators had been waiting for....
By Marc Montgomery, Radio Canada International | 02.13.2019
CRISPR is a recent technological breakthrough in simplifying gene editing,
It’s potential is enormous and at the same time it raises great concerns. Those concerns exploded when a Chinese scientist edited the genetic sequence of an embryo (germline) to create twin...
Last year’s heritable human gene editing scandal continues to reverberate. He Jiankui remains under investigation in China, where authorities have confirmed his work but the extent of his punishment remains unclear, possibly because of some ambiguity in the applicable regulations. He has definitely been fired by his university.
In the US, both Rice University and Stanford are formally investigating faculty members whose involvement with the work may have been more extensive than first thought. Michael Deem of Rice was revealed...
After the heritable human gene editing headlines of late 2018, and considering that the stakes include the future of human biology and the prospect of a new high-tech eugenics, it is no surprise that discussions have continued. What was not widely anticipated, however, was the emergence of a connection between old-school transhumanism, mutated into biohacking, and modern cryptocurrency, in the service of monetizing “the production of designer babies and human germline genetic engineering.”
Antonio Regalado’s story in MIT Technology...
