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Lawsuit: Boy dies after having gene therapy
By
Tim Bergling
Health24News
September 20, 2000

 

 
 

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Washington (H24N). The family of the first person to die after undergoing gene therapy has filed a lawsuit against the research team that carried out the treatment.

Jesse Gelsinger, 18, died last year at the University of Pennsylvania after undergoing gene therapy to treat a rare liver disorder. His family filed the complaint yesterday, one year and one day after the teen-ager’s death, alleging scientific and regulatory lapses in the experiment.

Gelsinger suffered from ornithine transcarbamylase deficiency, a deadly liver disorder that allows poisonous levels of ammonia to build up in the blood system. The therapy he underwent involved viruses designed to carry altered genes that, in theory, would reverse or stabilize his condition. Those viruses were also known to cause potential liver damage, but the doctors performing the experiment went ahead with the therapy, believing Gelsinger’s overall health was strong enough to sustain him.

His family’s lawyers contend the research team underplayed the risks involved and withheld crucial information about liver damage suffered by earlier volunteers and animal test subjects.

Also named in the lawsuit was University of Pennsylvania ethicist Arthur Caplan, who reportedly advised researchers to seek out adult patients like Gelsinger; other defendants include the Children’s National Medical Center in Washington, D.C., and the Children’s Hospital of Philadelphia.

 

 

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