Today is a big day for the HBOC community. It would be impossible to miss the news that the Supreme Court is hearing arguments today in the case known as The Association for Molecular Pathology v. Myriad Genetics, a case that has been winding its way through the court system for more than two years.
I awoke this morning to an excellent story by Nina Totenberg of NPR wherein she states that "There is no way to overstate the importance of this case." I agree. This case is not only of the utmost importance to those of us who have BRCA mutations but also to all aspects of the upcoming personalized medicine revolution, which Ms. Totenberg elucidated well in her piece in which she described the financial incentives and impacts of the decision for the biotech industry. I am troubled though that one very important aspect was not covered in this story, especially as today is Tax Day. Specifically, no mention was made about the fact that the government is a big sponsor of biomedical research and in fact spent millions on the hunt for the BRCA genes through the NIH and then the genes were patented by a private company and none of that public investment in discovery was repaid. The story focused on the dollars spent by Myriad on the search for the BRCA genes and why it deserves to protect this investment through the patent process. But what about the public dollars, my tax dollars and your tax dollars? Has everyone forgotten that Myriad was far from the only team of scientists racing to find these genes? Many of those teams of scientists in this country and other countries were financed at least in part with public money. Myriad just happened to be the first over the finish line. Had it been Dr. Mary Claire King, whose research sparked the all out race to find the specific genetic code for the Breast Cancer Genes then I have no doubt that we would not be paying $3,400 per test for a test that is less than comprehensive. For more information about this race to find the breast cancer gene please read Breakthrough: The Race to Find the Breast Cancer Gene by Kevin Davies and Michael White. It is an excellent read and an exciting story but it makes very clear the amount of effort that went into this discovery by people other than those scientists at Myriad.
My friend Joanna Rudnick, the amazing BRCA-positive filmmaker who made "In the Family" about living with a BRCA mutation wrote an amazing Blog about her journey about about her thoughts on today's Supreme Court arguments. Please read her blog and share it with your friends. Also, in honor of the Supreme Court arguments, POV is making In the Family available for free streaming for a limited time. If you have not yet seen it, now is the perfect opportunity. And please share your thoughts.
As Nina Totenberg said, the implications of this case reach far beyond the breast cancer genes, yet those of us with mutations on those genes are possibly the ones watching this case most closely. The NPR story can be found here.
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