The Saga of the Breast Cancer Genes: Real or Science Fiction?

This is one of those things that make you go, “Hmmm…”

Last January, I was reading Utne Reader magazine when I came across the article, “Humanoid Rights.” It was about how the American Civil Liberties Union (ACLU) was studying science fiction in an effort to gear up to defend our civil rights against science-things like…human cloning. Seriously? Yes, apparently.

But, the part that really stood out for me in this article was this:

In 2003 the organization hired a science adviser, Tania Simoncelli, to monitor scientific advancements for potential threats and act as a liaison to the scientific community. “I was rattling off topics that I thought had a litigation angle,” Simoncelli recalls, “and I said of course there’s always the issue of gene patents.” Chris Hansen, an ACLU staff attorney, balked. “What?” he said. “You’re telling me . . . the U.S. patent office is granting patents on human genes?” “Chris,” Simoncelli said, “it’s been going on for about 20 years.”


Did you know that Myriad Genetics holds the patent for two genes linked to the mutations that cause breast cancer (BRCA1 and BRCA2)? And in 2009, ACLU attorney Chris Hansen and their science advisor, Tania Simoncelli, helped the ACLU bring the biggest science-based lawsuit in its history against Myriad? And they claimed the patents to be invalid based on a 1980 Supreme Court’s decision that it’s not permissible to patent laws of nature or products of nature or abstract ideas? Neither did I.

I believe it goes without saying the Myriad’s patent holds these genes hostage so other companies and science labs who are working to learn more about the disease–and ultimately find a cure–are not able to do so legally.

The ACLU won the first battle in March, 2010, but then, of course, there are the appeals. And this summer was a big one in the life of the historic lawsuit.

On Friday, July 29, 2011, the latest appeal with the Federal Circuit Court decided that companies can obtain patents on genes but cannot patent methods to compare those gene sequences. This allows Myriad Genetics to exclude others from testing and conducting research on patented genes. Those who want to obtain genetic testing to determine whether they are at risk for breast cancer have only one option for full genetic sequencing: Myriad Genetics. Myriad decides what tests are offered, which mutations are included, at what cost, and what research can be conducted without fear of patent infringement liability.


Dianne Armitage recently wrote about this decision in her article, “What’s Yours is Mine: The Continuing Controversy over Gene Patenting” on I encourage you to read it and make up your own mind. And here are a few other things to check out:

Is it real or science fiction? I’m afraid it may be both. And, tell me…does this make you go, “Hmmm…?”


The Utne Reader article “Humanoid Rights” by Adam Serwer was originally printed in The American Prospect (Oct. 2010).

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2 Responses to The Saga of the Breast Cancer Genes: Real or Science Fiction?

  1. Dianne Armitage says:

    I keep hearing the theme from Twilight Zone in regards to this story. About 2 weeks after I wrote What’s Yours is Mine my oncologist told me since I’ve been ER/PR negative both times and am also BRCA1 & BRCA2 negative I should think about getting the gene testing now available because it can spot previously undetected mutations. I already knew I was going to have to deal with Myriad — but I was curious about what it would cost since I’d had the original BRCA1 and BRCA2 tests when I was last diagnosed. Even the abbreviated bloodwork I need will be $700. This is $700 out-of-pocket because it’s not covered by my insurance. They did say I could pay $10 a month (with no interest) until it’s paid off. Quite a risk on their part if I test positive since it will take me over 5 years at that rate to reimburse them! 😉 I do feel I should be tested since I have 3 sisters and a granddaughter — but am shaking my head at the expense — and the fact I have only one place I can get this testing done.

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