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Behind the Jesse Gelsinger Story

Genetic Crossroads
August 4th, 2000

In the Spring 2000 newsletter of the National Association of Science

Writers, Washington Post reporters Deborah Nelson and Rick Weiss discuss
their investigation of the gene therapy experiment at the University of
Pennsylvania in which Jesse Gelsinger died.

"How We Uncovered the Hidden Fatality in a Clinical Trial" explains that
the two reporters learned of the death almost serendipitously, in the
course of a different investigation. They go on to recount how they
discovered that:

o the lead investigator, James Wilson, had a clear financial conflict
of interest in the experiment—despite his initial assertion to
Weiss that this was not the case;
o the deaths of monkeys treated with a viral vector similar to the one
that killed Gelsinger had been omitted from the consent form that the
young man had signed—though the approved version of the consent form
had included it;
o four previous volunteers in the trial had suffered adverse effects so
serious that the study should have been halted—but that the problems
had not even been reported to federal regulators.

National Association of Science Writers, PO Box 294, Greenlawn, NY 11740,
phone: 631-757-5664.


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