On September 17th, 1999, eighteen years old Jesse Gelsinger died as a result of his voluntary participation in a gene – therapy experiment.
Jesse has a rare genetic disease, known as OTC (Ornithine transarbamylase ) children with OTC die in their first month of life, and half die before their fifth birthday. Jesse had a mild form of the disease, and was therefore, able to control the disease, through he needed to take 32 pills a day.
However, he volunteered for a study designed to test the safety of a treatment that would be used on babies with the fatal form of OTC, and was assigned to the final test subject group.
At the time, the researcher believed that in the worst case, Jesse’s participation in the trial might result in an inflamed liver. However, Jesse’s sever immune system reaction led to multiple organ system failure, and he died four days after the gene therapy injection.
Jesse’s death rises an important issue – namely that promised of the technology is represented as very great, and the reality of it is very dangerous. It has forced researchers and government officials to rethink about the safety of gene therapy.