Smoke and Mirrors: Jesse Gelsinger, Human Experimentation, and Gene Therapy

By Scott Abeel.

Published by The Humanities Collection

Format Price
Article: Print $US10.00
Article: Electronic $US5.00

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.

Keywords: Gene Therapy, Bio Ethics, Medical Research, Medical Ethics in Gene Therapy, Genetic Engineering, Informed Consent

International Journal of the Humanities, Volume 8, Issue 4, pp.15-30. Article: Print (Spiral Bound). Article: Electronic (PDF File; 659.410KB).

Scott Abeel

Graduate Student, Department of History and Art History, George Mason University, Fairfax, Virginia, USA

I am currently in my second year studying to achieve a Master’s of Arts Degree in American History at George Mason University. My goal is to earn my masters degree and embark on a doctorate program in Atlantic World History. Ultimately, I’d like to research and teach at an undergraduate level. Previous to my return to academia, my former profession was real estate investment and rehabilitation of historic properties. I spent over twenty years in this field after graduating from St Lawrence University with a bachelor of arts degree in history.


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