Website Memorializes Life of Jesse Gelsinger - Victim of Gene Therapy Tragedy
Jesse Gelsinger finally got his own website today, years after he sacrificed his life for science. Jesse’s death brought much needed awareness to the need for safeguards in medical research involving humans when he tragically died after being treated in a gene therapy experiement. Encinitas, CA (PRWEB) February 12, 2005 — Jesse Gelsinger finally got his own website today years after he sacrificed his life for science. Jesse was 18 when he was involved in a study using gene therapy which was supposed to help find a cure for the rare disorder that blocks the body from processing nitrogen properly. Researchers had hoped to cure him by injecting him with a modified virus carrying a gene that could replace the medications and special diet that had been controlling his condition. Jesse?s death was a turning point and became critical in the implementation of changes in the way these studies are conducted when the study that he volunteered for went terribly wrong. He apparently got too large a dose of the adenovirus that delivered the gene therapy, and no specialist was on hand to respond to a sudden immune emergency that began creating complications that led to his tragic death. The Justice Department yesterday reached civil settlements with the physician-researchers who oversaw the 1999 gene therapy experiment. The government had alleged that the research team, led by University of Pennsylvania gene researcher James M. Wilson, failed in numerous ways to protect patients who volunteered for the experiment. Among the alleged lapses were numerous failures to halt the experiment when serious toxicities arose; failure to fully disclose the study’s dangers in informed-consent documents; and statements falsely suggesting that earlier patients in the study had benefited from the treatment. Fines of over $500,000 were levied against both the University of Pennsylvania and the hospital where Gelsinger was treated. After Gelsinger’s death, several changes in federal and institutional rules governing human research were enacted. The website Jesse-Gelsinger.com was created as a dedication to the memory of Jesse Gelsinger by the mother of a 20 year old boy who saw that Jesse did not have a worldwide memorial, and was touched by hearing the story of Gelsinger and by his unknowing contribution to raising awareness on issues in medical research. Contact: e-mail protected from spam bots http://www.jesse-gelsinger.com
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