Jesse Gelsinger would want his legacy to be
about advancing the protection of individuals undergoing gene
therapy, a lawyer for his family said last week.
Six weeks after filing suit in the Philadelphia Common Pleas
Court over the 18-year-old's death, the Gelsinger family reached a
confidential settlement with parties affiliated with the University
of Pennsylvania 's institute for Human Gene Therapy.
Gelsinger died in September 1999 while undergoing gene therapy
as part of a study of Ornithine Transcarbamylase Deficiency.
Gelsinger was diagnosed with the rare disorder, which prevents
the body from processing ammonia, at age 2.
According to counsel for the family - Robert J. Mongeluzzi and
Larry Bendesky of Saltz Mongeluzzi Barrett & Bendesky and Alan
C. Milstein and Harris L. Pogust of Haddonfield 's Sherman
Silverstein Kohl Rose & Podolsky - the parties had been seeking
a resolution on to the emotionally charged issue since August.
In a joint statement released Friday, the university said the
agreement will "enable Penn to concentrate on moving forward with
its aggressive efforts to improve its oversight and monitoring of
human subject research, an effort to which the university has
already devoted substantial resources of time, energy and money.
Our goal is to establish - and to continually improve upon - a
national model for clinical research and in this way honor Jesse
Although a complaint was filed in September, conversations
continued, Mongeluzzi said. The complaint was filed against the
university; Genovo, a bio-tech company; the Children's Hospital of
Philadelphia and the Children 's National Medical Center in
Washington, D.C.; and several doctors and professors affiliated
with the project. Pepper Hamilton 's Nina M. Gussack represented
the university in the suit.
The complaint charged those affiliated with the experiment with
wrongful death, strict products liability, lack of informed
consent, infliction of emotional distress, and fraud and
misrepresentation to the patient and the Food and Drug
"I think everybody realized that the issues were very serious.
It was emotionally charged for everybody involved. We were looking
down the road and saw where we might go in the future. We wanted to
reach an amicable conclusion now rather than later," Bendesky
Counsel for the plaintiff submitted an undisclosed monetary
demand and a fall deadline to the defense early in negotiations,
Mongeluzzi said. The deadline was extended to late October to
address defense concern s about insurance coverage. The final
settlement figure was close to the original request, Mongeluzzi
"The number and magnitude of local jury verdicts in the last two
months certainly was a factor" in the settlement, Mongeluzzi said.
"Our number was going to go up." In late October, Philadelphia
Common Pleas Court juries awarded $55 million in one case and $ 100
million in another.
The settlement, which was finalized Wednesday, also released two
plaintiffs - Penn trustee professor of bioethics Dr. Arthur L.
Caplan and former medical school dean Dr. William Kelly - from the
According to the Gelsinger family's statement, "the purpose of
this lawsuit was always to bring to the public certain critical
issues concerning human participation in clinical trials in general
and gene therapy trials in particular. While the Gelsingers
fervently hope gene therapy will one day be the means to cure many
of the horrible diseases afflicting so many, they urge that the
road toward this or any medical breakthrough is free of conflicts
of interest, bioethical missteps and inadequate government
It was closure the family most wanted, Bendesky said.
According to Mongeluzzi, "The family paid the ultimate
sacrifice. One of the things they wanted to accomplish was to have
an impact on how clinical trials are run . But they paid a hell of