Terminal Diseases ONLY? Gene therapy ethics

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Omai
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Terminal Diseases ONLY? Gene therapy ethics

I found this article in Wired magazine about the most recent gene therapy failure. It raises multiple, very interesting bioethics dilemmas. In 2007, Jolee Mohr died during a gene therapy clinical trial against rheumatoid arthritis. An infection caused massive organ failure. The first question is whether she was clearly aware of the risks when she signed up for the clinical trial. The article implies that she was not. She was reportedly told that the trial was to "cure" her disease when in fact the goal of the trial was to determine the safety of the treatment, not the outcome. Her personal doctor was one of the doctor's involved in the clinical trial (ethically unsound conflict of interest).

Outside of these ethical problems, this case raises the question of whether such a dangerous treatment should be used in nonterminal illnesses. Jolee was living with her disease, well regulated by a regiment of drugs. Is it ethical to run gene therapy trials on non terminal diseases? I'm not sure. I agree with the doctor quoted at the end of the article that it is difficult to assess a clinical experiment when all of your subjects are terminal. At the same time, scientific experiments (cause that what it is, and experiment, we just call it a clinical trial) on human beings have to put safety first. What is an acceptible risk? Especially when the risk taker (subject) was underinformed and possibly coerced by her doctor.

I'm interested in what the larger scientific community thinks?

Omai