Liberate the Breast Cancer Genes

The ACLU has taken on a patent case for the first time in its nearly 90-year history. The government's been allowing private companies to patent human genes. The ACLU thinks that violates the First Amendment and patent law. This is heady, complicated stuff. But when a patent creates a monopoly that restricts the free flow of information, a lot is at stake, and when we're talking about something like genes associated with breast and ovarian cancer, real women are hurt. This video about the case features some of those women's stories.

mytubethumbplay
%3Cembed%20height%3D%22296%22%20width%3D%22360%22%20flashvars%3D%22%2F%2Fwww.youtube.com%2Fwatch%3Fv%3D6h6X46-qz14%26amp%3Bimage%3Dhttp%3A%2F%2Fi.ytimg.com%2Fvi%2F6h6X46-qz14%2F0.jpg%22%20allowfullscreen%3D%22true%22%20allowscriptaccess%3D%22always%22%20type%3D%22application%2Fx-shockwave-flash%22%20src%3D%22%2Ffiles%2Fswfobject%2Fmediaplayer.swf%22%3E%3C%2Fembed%3E
Privacy statement. This embed will serve content from
Please note that by playing this clip You Tube and Google will place a long-term cookie on your computer. Please see You Tube's privacy statement on their website and Google's privacy statement on theirs to learn more. To view the ACLU's privacy statement, click here.

"How can it be that a company controls genes? How is that possible?" Barbara Brenner asks in the video. She's the director of Breast Cancer Action and one of the plaintiffs in the lawsuit.

We hope this short video will inform and inspire. It provides a simple explanation and overview of the issues in our case against the U.S. Patent and Trademark Office, which granted Myriad Genetics patents on the BRCA1 and BRCA2 genes, the genes associated with breast and ovarian cancer. The video also features the women directly affected by the patents. They represent any number of mothers and daughters you may know facing the same obstacles as three of the plaintiffs in our case, Genae Girard, Lisbeth Cerianai, and Runi Limary.

The results from Myriad's genetic test are a strong factor in women's decision to have children. Breast cancer survivor Genae Girard, 39, took Myriad's genetic test to determine if she's at risk for ovarian cancer. Her test results showed that she's at a high risk for the cancer, and should have her ovaries removed. Because only Myriad holds the patents on the genes associated with breast and ovarian cancer, no one else can offer this genetic test without its permission. Therefore Girard can't get a second test, or a second opinion, on whether to have her ovaries removed.

Lisbeth Ceriani, a single mom, simply can't afford the more than $3,000 test. Getting the test paid for by insurance can be difficult.

"I'd like to see my 8-year-old daughter go to college," Ceriani says. "But if I have the mutation, there's a huge chance I'll end up with ovarian cancer in the immediate future. I need to have that test so I can get my ovaries out if I need to before anything happens. I don't like those odds." Myriad's monopoly on the genes, and therefore the genetic test, prevents other companies from offering this potentially life-saving test at a lesser cost to patients.

Dr. Wendy Chung, Director of Clinical Genetics at Columbia University and another plaintiff in the case, says she too often sees women like Girard and Runi Limary who can't seek second opinions and are given little data to understand what their tests results mean because of the patents.

Limary had breast cancer at 28 and took Myriad's test to find out if it was likely to return and if ovarian cancer is a concern. The result was puzzling: Limary was told she had a genetic variant of "uncertain significance." It turns out other Asian-American women like Limary had also received these results. But because patent-holder Myriad has not determined the variant's significance, and other companies are excluded from offering the test, these women are left to guess whether their variants warrant removal of their ovaries along with their ability to have children.

Tania Simoncelli, ACLU science advisor, says a lot is at stake if companies like Myriad are allowed to own genes and have a monopoly on everything associated with those genes.

"They own not only the gene, they own any future tests, any future drug, any future therapy, so we're putting our trust in one single company," says Simoncelli. "There are places where the patent system has gone too far. Too much patent protection can in fact trample our civil liberties."

Please share this video far and wide and let others know why it is important that we stop the government from allowing companies like Myriad to own our genes.

Add a comment (43)
Read the Terms of Use

Lise Quinn

This is an outrage! How can an individual like me help to stop this?

Steven M. Rosen...

I am writing to you as an individual, although I am employed in the diagnostics industry. I am very troubled by what what the ACLU is doing. In my opinion is it tantamount to advocating the stealing of intellectual property from companies who have made significant investments in delivering healthcare innovation to the public. There is a huge investment that is required to bring a healthcare diagnostic product to market. Companies will not make the investment to discover, development, clinically validate and make commercially available technology which they do not see making a profit. If the ACLU is sucessful in its efforts, companies will start to question whether the payback will be there for healthcare products. Potential cures for disease and new diagnostic tests will never become commercially available. Additionally, I believe the ACLU is wrong in stating that companies are not able to innovate and work with the technology if it is patented. There is clearly a a research exclusion for patents that permits innovation.

Steven M. Rosen, Ph.D

Email: Stevenmarkrosen1@yahoo.com

SD

Dr Rosen is a self serving member of the industry that we condone. We as researchers are supposed to help, not hinder, people with disease. This issue crosses the boundaries of patent protection. Nail the bastards.
I have been a medical researcher for 25 years and am sick of the patent abuse in this country.

Erik Kallstrom

I am currently doing research to determine the interest in America's space program. If you have a minute please take my survey at:

http://spaceprogrambudget.questionpro.com

Your time very important for our research and your opinions matter! Thank you ~ Erik Kallstrom - ERAU Graduate student.

big T

do you bastards ever run to the rescue of any white christian males???? it seems all you are interested in is ultra-liberal causes for negros, female , men that take it in the hind end , (that is not right,no matter who you are), lillie lickers. you forget about the people that founded this country,white european christian male. give you the right to do what you need, to pursue happiness.

Michael Dutton

I suppose it should behoove me that our government would actually allow a company to purchase a patent on a gene. I suppose I should be surprised that a U.S. company would actually want to "corner the market" on an R&D health issue.
But I'm not surprised because I've learned that our government and the majority of U.S. companies would do absolutely anything - anything - to turn a profit, regardless of consequence.

Michael Dutton

Oh, yes ... Doctor Rosen - perhaps healthcare, including research & development, represent fundamental areas within the human experience that should NOT be subsets of the capitalist enterprise.
Perhaps it's political heresy, but ... healthcare should be non-profit.

Jim Fyfe, Ph.D.

As a researcher in the drug industry, I was very troubled when companies/individuals began to be allowed to patent genes. It was unprecedented, illogical and unwise to let people to patent something that nature had produced. It would have been analogous to someone discovering and thus patenting an enzyme in the body. No one did that! We used the information that scientists learned about nature's enzymes to synthesize compounds that affected the enzymes, and come up with medicines. But yet here we were allowing patenting of nature's genes. Outrageous!

brian t bayer

ceo's at certain american co.s need to have a dna test
to determine if they are at all human!

Jody Ranney

My first response is how could this happen? Genetic patenting! It probably happened because no healthy, sane person would conceive of it, therefore the issue was not covered in the patent codes. Now that the insanity is public information, then we need to salute and support the ACLU's efforts to protect the countless women whose lives are affected by the techno-corporate greed of Myriad (by any name). Public abuse under the control of private business is not new. Genetic patents mandating access to health information based on ability to pay is evil. Shame on Myriad or anyone who invests and promotes their vileness.

Pages

Sign Up for Breaking News