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The Fight To Take Back Our Genes

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Published on Mar 25, 2013

Check out:
aclu.org/genepatents

Association for Molecular Pathology v. Myriad Genetics:
This case involves a challenge to patents on two human genes known as BRCA1 and BRCA2. Mutations in those genes correlate with an increased risk of breast and ovarian cancer. On behalf of a large coalition of research scientists, patients, and patient advocacy groups, we have argued that human genes cannot be patented because they are classic products of nature.

The case goes to the U.S. Supreme Court on April 15th.

Find out more:
aclu.org/genepatents

Transcript:

- Not many people who have cancer, their cancer could have been prevented. I have advanced stage ovarian cancer that could have been prevented. My name's Kathleen Maxian. My prognosis is that I have a 20% chance of living for five years. I remember the day that I got the call from my gynecologist. He said to me, "Oh, honey, you have ovarian cancer." After my surgery... Dr. duPont says to me, "Kathleen, after your surgery, your mother mentioned that your sister had breast cancer." And I said, "Oh, yes, but our cancer isn't genetic, because she had the testing, and the testing was negative." And I will never forget that she put her head down and she looked back up at me and she said, "We'd like to see a copy of the tests." - BRCA1 and BRCA2 are two genes that when mutated or changed increase the likelihood that women will develop breast and ovarian cancer. The genes were found using many different researchers, but they were patented by Myriad Genetics in the mid-1990s. Many laboratories in the United States were offering BRCA1 and 2 testing. When Myriad Genetics began cracking down and closing labs, no one else could offer the test. When a patent comes to mind, you think of a new invention. There was nothing new about what they were doing. But the comprehensive testing that they've developed looks for mutations within BRCA1 and 2. - I believed that the test that my sister got was a comprehensive test. This is the gold standard of genetic testing, it's only done at this one lab, and it comes back, and it's negative. And everybody in our family kind of goes, "Whew," you know? - But what we learned in the late 1990s, early 2000s, is that "comprehensive BRAC analysis" was missing mutations in some families. I contacted Myriad Genetics and asked them if we could offer a test for our patients who tested negative, but in whom we really suspected we were missing something, and we were told, "Absolutely not. It's a patent violation." And Myriad, after many years, developed BART testing to hopefully pick up those patients. Kathleen's sister didn't meet the high risk criteria to be included in Myriad's BART analysis for free. - And her genetic counselor said, "Okay, because your sister has ovarian cancer now, you meet the criteria." Her genetic counselor tested her, and the result was positive. - Unfortunately, in that family, the mutation fell in the BART region. - I'm like, "What? "What is going-- What do you mean? What do you mean it's positive?" Like, and if she had had that two years ago, it would have been a no-brainer for me to have a hysterectomy. - I think that this patent, which has jacked up the prices and made testing more difficult in many circumstances, may be preventing hundreds or even thousands and thousands of people from learning that they're at high risk for these terrible diseases. - I feel like this-- that cancer has taken over my life. And...and... I live in fear every single day. I would love for them to say, "This is bigger than us. "Let's get rid of the patent. Let's let other people get involved in this." [gentle acoustic music]

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