Posted: 9/16/07 Section: News

Media Credit: The Associated Press The Mohr family poses in this undated photo supplied by the family on Sept. 10. Jolee Mohr died in a Chicago hospital in summer 2007, three weeks after taking an experimental treatment for rheumatoid arthritis.

TAYLORVILLE, Ill. - A few hours before she died this summer at the age of 36, Jolee Mohr lay in a Chicago hospital so swollen by internal bleeding and her failing kidneys that her husband decided against bringing their 5-year-old daughter to say goodbye. The girl wouldn't have recognized her mother.

Robb Mohr couldn't bring himself to watch her die and he spent his wife's last hours talking with her helpless and puzzled doctors. One vowed to get to the bottom of the illness, and there were several clues to go on.

The most unusual was this: Jolee Mohr fell ill the day after her right knee was injected with trillions of genetically engineered viruses in a voluntary experiment to find out if gene therapy might be a safe way to ease the pain of rheumatoid arthritis. She was dead three weeks later.

The sponsor of this nationwide experiment, Targeted Genetics Corp. of Seattle, has halted the work and more than 125 patients are being evaluated, according to a company spokeswoman. No other problems have been reported, and the company believes patients were adequately informed of the treatment's risks.

U.S. health officials are investigating Mohr's death, and the case is expected to be discussed Monday by advisers to the National Institutes of Health. There's a lot at stake, including answers for Robb Mohr, and the interests of Targeted Genetics. But there also are questions about how medical studies are done and how much study volunteers are told of the risks.

"To me, it's an avoidable death," Mohr said during an interview at his home amid the cornfields of central Illinois. "And you're going to have to really show me a lot of stuff to convince me that it wasn't."

There have been more than 800 gene therapy studies involving 5,000 U.S. patients since the NIH approved the nation's first human gene transfer study in 1989. Yet there are no approved therapies despite 17 years of research, and the only major success - a cure for the rare inherited immune disorder known as "bubble boy disease" - came with a high cost: leukemia linked in 2003 to the virus that delivered the treatment.

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