Paul Gelsinger lost his 18-year-old son Jesse, who suffered from a rare liver disorder, during a gene-therapy experiment at the University of Pennsylvania in September 1999. Jesse's disease was under control at the time; he participated in the clinical trial only because he wanted to help other sufferers of his disease. He died after special viruses designed to carry healthy copies of a gene were injected into his body and triggered an intense immune system reaction.
Mr. Gelsinger has spoken widely about his son's death, at university forums and medical centers and to organizations such as the American Academy of Pharmaceutical Physicians and the Association of Clinical Research Professionals. He testified before the Senate Health, Education, and Labor Subcommittee in 2000, and he addressed a meeting of the National Human Research Protections Advisory Committee (part of Health and Human Services) in 2002. He is the vice president of Citizens for Responsible Care and Research (CIRCARE), an organization devoted to protecting human subjects in research and medical treatment.
Working with the National Organization for Rare Disorders, Mr. Gelsinger helped produce a booklet on Jesse's disorder, ornithine transcarbamylase deficiency (OTCD). He also was deeply involved with making the German documentary "Why Did Jesse Have to Die?" He serves on the advisory board to the National Committee for Quality Assurance and is a member of a working group on informed consent for the National Human Research Protections Advisory Committee.