A loss of words, a loss of respect for the scientific community

I learned a strange thing today: apparently, genes can be patented. According to an article in the New York Times (contributed, incidentally, by Michael Crichton), about one fifth of all the genes in your body are privately owned by scientists and research institutes. If any other scientists want to do research on these genes, they must pay a royalty to the patent holder. You can’t even donate some of these genes for study without permission.

This inhibits research, it inhibits the development of treatments and accurate genetic testing, and it can raise the cost of treatment prohibitively. And you know why I find this issue particularly galling? Because the companies own pathogens as well, including Hepatitis C. And my mother and I have Hepatitis C.

Just last year, my mother and I finished a forty-eight week treatment study for the disease. We took several pills a day, and every week injected a solution into the skin on our stomachs. Every evening after I’d given myself the shot, I would experience headaches, chills, aching, and sometimes a fever to boot. Other, more constant side-effects included a loss of attention span, loss of energy, some depression, some emotional lability. And in the end, the treatment was unsuccessful, both for my mother and myself – within weeks of stopping treatment, the virus was back to full levels in both of us.

“The owner of the genome for Hepatitis C is paid millions by researchers to study this disease. Not surprisingly, many other researchers choose to study something less expensive,” Crichton writes. Right now, I know of only one available medical treatment for Hep C – the one that didn’t work. Efforts to produce a newer, more promising treatment have been severely hampered and long postponed, and people like me are left just waiting, trying to take care of our livers by other means.

I can think of no more odious way of amassing wealth than from a disease affecting millions of people. There are people who donate most of their income to ending diseases around the world (multi-billionaires Bill Gates and Warren Buffett come to mind), and there are those who ensure that certain diseases remain by charging people to study them.

I’m at a loss. This is absurd.