Margaret has been bugging me to blog more often (or at all) and with all the good tv shows done for the summer, I figured I might as well. Plus, Margaret finally took an interest in what I do for a living. Here's how it happened.
DeNeece got the results of her genetic testing and discovered that she has a mutation in the BRCA 2 gene that makes it more likely for her to get breast cancer. BRCA 2 is one of two genes (creatively named BRCA (as in breast cancer) 1 and BRCA 2) that are associated with breast cancer. If you have either of these genes, your odds of breast and ovarian cancer go way up.
Both genes are patented, oddly enough by a company called Myriad in Salt Lake City. The ACLU and others have recently sued to try to invalidate the patents, on the grounds that genes are products of nature and some free speech argument that is too idiotic to get into. You can see the Huff Po piece with some interesting video links on the issues in the lawsuit here.
As professor Crouch said, the gene patenting debate has been interesting - emphasis here on has been. The genome has been mapped and sequences published. Very few new patents claiming isolated human genes are being filed. The ones already patented will expire within the next decade -- most of them will expire before being put to any practical use.
The argument that those genes exist in nature and shouldn't be patentable doesn't do much for me. Most drugs exist in nature. You can patent them if you find them and isolate them. There are very good reasons for that, and I don't see why genes are different.
The ACLU's issue is that one company controls the diagnostic for the BRCA genes and that this prevents research on the genes and makes tests for the gene expensive, which precludes some women without the right insurance from getting the test.
The ACLU complaint seems to fundamentally misunderstand the point of the patent regime. The beef about cost is legitimate, but that's sort of the point of patent protection. It allows people to charge more than they would otherwise, or to exclude others from competing with them in the market. This makes potential life saving diagnostics and therapies more expensive. It also makes potential life saving diagnostics and therapies possible. Check out the video:
At around the 45 second mark, before the diatribe about how evil the patent is, the narrator says this: "After Mary Claire King's initial discovery, labs across the country, including hers, entered into a race to find the exact location of the BRCA 1 gene." There is a reason that labs across the country got into that race, and it wasn't for the love of science. It was because there was a pot of gold at the end of that rainbow. The patent protection makes that pot of gold possible, and the pot of gold makes companies develop therapies that save lives. So yes, people have to pay more for 20 years for those inventions. But I'm grateful that Margaret has the chance to get that test, even at that price, to figure out if she has an elevated chance of getting cancer. And in 2015, when the genes start coming off patent, all those issues magically go away and everyone is happy.
It's interesting for us that this case just hit and is in the news precisely when DeNeece is seeking treatment at the University of Utah, one of the defendants in the case, and the best place to get this kind of diagnostics done. My guess is that the legal case will go away relatively soon on summary judgment. Hopefully so will DeNeece's cancer.