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Gelsinger wrongful death lawsuit names bioethicist Caplan

Genetic Crossroads
October 16th, 2000

The family of Jesse Gelsinger, the 18-year-old who died last September
in a gene therapy experiment at the University of Pennsylvania, has
filed suit against the researchers and institutions involved in running
the experiment: the university, two medical facilities, and Genovo Inc.,
the biotech company founded by lead scientist James Wilson that had a
stake in the successful outcome of the experiment. The lawsuit accuses
the defendants of negligent, reckless, or fraudulent acts.

Gelsinger's death was followed by revelations of serious regulatory
violations and financial conflicts of interest in the Penn trial,
as well as in hundreds of gene therapy experiments nationwide. (See
Issues 7 and 10 of this newsletter.)

Media coverage of the lawsuit focused on its inclusion of well-known
bioethicist Arthur Caplan, who advised the researchers on the design
of the experiment. Caplan argued that the parents of sick infants are
too desperate to provide true informed consent, and that the experiment
should therefore be conducted on relatively healthy adults. For more
on Caplan's role, and on bioethicists' growing influence and financial
conflicts, see Arthur Allen, "Bioethics comes of age,"

In venues unrelated to the Gelsinger case, Caplan has often argued
that human germline engineering is "inevitable." In December 1999 he
wrote, "Before the next century is out, fetuses will no longer need
their mother's womb for nourishment and growth. We will see many
children made by the artificial creation of embryos. . .This prediction
is 100 percent certain. . ..There will be strong social pressure to use
eugenics to improve children in order to minimize the social cost of
disease and chronic disability. The rush to use eugenics will be
amazing, with parents competing to give their kids the `best' start
in life." See <http://www.msnbc.com/news/352113.asp>


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