Today, the Supreme Court will begin hearing testimony regarding the patenting of genetic material/DNA. While there are a lot of people talking about how bad this is, there’s not a whole lot of explanation about WHY you shouldn’t want a private bio-labto own your DNA. If you haven’t read the book, The Immortal Life of Henrietta Lacks, it’s a great example of what goes wrong when scientists use DNA without the permission of the person from whom that DNA came.
Here are reasons why you don’t want Myriad, or anyone else for that matter, to hold a patent on the BRCA gene (or any other gene):
1) No one can do research on these cells except Myriad, which means there are limits to what this DNA could potentially do for science. In fact, Myriad makes so much money just from BRCA testing (at $3000+ a pop) that there’s no reason for them to use your DNA at all, thus making it of no benefit to science whatsoever. They could just throw it in the garbage!
2) Only Myriad makes money from any scientific developments that come about from using your DNA (so, if they use your genes to make a cancer treatment that makes billions of dollars, you don’t see one cent – although I suppose I’d be thrilled to just be credited by them naming the treatment after me!). This is basically what happened to Henrietta Lacks, whose family lived in poverty for generations while scientists and labs made millions of dollars on vaccines they developed from her unusual cells.
3) Myriad can charge whatever they want for BRCA testing. And not all insurances are willing to cover the whole cost, if any. This puts many people at risk – keeping people from that type of information may as well be considered manslaughter. Ok, perhaps that’s exaggerating, but seriously – if you don’t have the information you need to make important decisions about your health, it could be a matter of life or death! Not to mention, getting results back from Myriad can take several weeks, sometimes months. If your doctor was allowed to do it in an on-site lab, you could have results the next day for less than $200.
4) You can’t get a second opinion on the results of the BRCA test. If Myriad says you’re clean, then you can’t have anyone else do the test to make sure they’re correct (and, for the record, they have been wrong!). Likewise, if Myriad says you do have the gene, then you’re likely to have multiple surgeries based on those findings, all without being able to double-check that you do indeed have the mutation and that the surgeries are necessary.
5) Myriad and these other labs are just greedy bastards. What could possibly be their reason for wanting to own a patent on DNA? Money. Pure and simple. I can’t think of another justification for wanting to withhold anything from the scientific community that could help thousands, if not millions, of people get medical information and treatment that they need. This is all about greed.
There is, however, one good reason you might want a private lab to own your DNA. The way I figure it, my DNA has cancer in it. And if Myriad owns it, then I should be able to sue them for its defectiveness. So there.
Here are some great resources to learn more about this issue:
Joanna Rudnick’s In the Family documentary, for free on PBS.org.
Today’s story on NPR’s Morning Edition.
Sue Friedman’s important blog post.
The ACLU explains its case.
Salt Lake City Tribune (Myriad’s headquarters are in Utah)
Forbes magazine article gives voice to Myriad’s CEO, and shows how much of what he has to say is just lies.