Abstract

On September 17, 1999 the eighteen-year-old Jesse Gelsinger died of massive organ failure as the result of a phase-one gene therapy trial at the University of Pennsylvania’s Institute for Human Gene Therapy. Suffering from a rare genetic metabolic disorder, ornithine transcarbamylase deficiency, Gelsinger’s condition was being managed through diet and medication. He signed up for the study not because he would benefit from the proposed procedure, but because his contribution to medical research might help in the future treatment of infants born with this condition. He became the first known research fatality and the center of ethical debate concerning gene therapy. Like many scientific breakthroughs gene therapy became in the last decade of the late twentieth-century a glamor field and one that promised immense profits to bio tech companies that successfully brought a product to market. Centered on the case of Jesse Gelsinger, this paper argues that ego, financial conflict of interest, and human error were contributors in his death. Further, the paper explores historic problems relating to bioethics and human experimentation, especially in relation to breakthrough medical research.