Gene Therapy Kills

It's tempting to think that we could crack the secret to long life and cure all diseases. The lure is not only one to perfect health but a fantasy about the overall importance of our genes, our heredity, in contrast with the influences of this world on our well-being.
There is a fantasy that an individual secret identity tying one back to a select community of special ancestors is the true source of one's history, culturally as well as medically. The fantasy is deadly not only as a source of warfare but also as lure to poor medical research. The unfounded faith in genes as a cure-all for human disease diverts scarce government funding from proven public health solutions to alchemy-like pursuits, and for the individual patients involved in this research, the experiments can be deadly.

To give one example: asthma rates in the United States have increased 100% in the last 20 years. This cannot possibly be attributed to changes in our genes. And yet more resources are devoted to finding genetic than environmental causes of asthma. I have published a few articles on this, including one about the first gene therapy death in 1999 discussing the origins of the Human Genome Project in the Manhattan Project. There's also a critique of racialized genetic medicine's intellectual history I published in Social Text and a policy article advising on alternative approaches to health research comparing ethnic and racial groups.

Here's what the New York Times reported today about Jolee Mohr:

Jolee Mohr, who had a 5-year-old daughter, died on July 24 at the University of Chicago Medical Center, three weeks after trillions of genetically engineered viruses were injected into her right knee as a test of an experimental treatment for rheumatoid arthritis. The type of virus used as a gene carrier has widely been considered safe and is being used in 35 other trials.

Autopsy data presented at the committee meeting yesterday in Bethesda, Md., suggested that the main cause of death was a fungal infection, histoplasmosis, that had gone out of control, destroying her organs. Ms. Mohr also suffered from internal bleeding, with a pool of blood in her abdomen that was so large that it displaced her kidneys and other organs.

The Times buried this story on A20, in contrast with its front page coverage of "promising" developments in the field, thereby contributing to the mindset of someone like Ms. Mohr. Her widower says that she was betrayed by researchers, who should not have enrolled a largely healthy 36-year-old in their risky experiment. But the fault is also with the media who perpetrate genetic iconography. Who doesn't want to be in on the ground floor of the next exciting cure?