The Ethical Dilemma Involving Jesse Gelsinger
The ethical dilemma involving Jesse Gelsinger
“An ethical dilemma is a situation in which an individual is compelled to choose between two actions that will affect the welfare of a sentient being, and both actions are reasonably justified as being good, neither action is readily justified as being good, or the goodness of the actions is uncertain” (Butts & Rich, 2008, p. 50). This type of dilemma can be painful and difficult to resolve because of the aspects and people involved. This paper will critique the ethical dilemma surrounding the unfortunate death of Jesse Gelsinger, its background, positive and negative aspects of the dilemma and stakeholders involved. This paper will also evaluate an ethical decision making model chosen to help formulate the rational of the outcome of this dilemma.
Jesse Gelsinger was a victim that died after participating in a clinical trial for gene therapy. He was an 18 year old young man diagnosed with a rare metabolic disorder called ornithine transcarbamylase deficiency (OTCD). Jesse had been diagnosed with a less severe case of OTCD since the age of 2. He controlled it with a low protein diet and a combination of drugs. Jesse was the youngest chosen to participate in this clinical trial by a group of University of Pennsylvania researchers. The trial was being pursued with the hopes of developing a treatment for infants born with the same disease as Jesse. On September 13, 1999, Jesse received the highest dose of the adenoviral vector containing a corrected gene to test the procedure. Four days later after receiving the vector, Jesse’s body suffered a major immune response leading to multiple system failure and brain death. A federal investigation into his death was led by the Food and Drug Administration (FDA) to determine what went wrong. The FDA discovered that the lead researcher, Dr. James Wilson and the other scientists broke several...