Liberate The Breast Cancer Genes

Liberate The Breast Cancer Genes

ACLU Releases Video Showing How
Restrictive Gene Patents Hurt Women




New York, May 13 /PRNewswire/ — Breast cancer survivor Genae Girard underwent genetic testing to determine whether she's also at risk for ovarian cancer and should have her ovaries removed. But the test didn't come with a second opinion - a problem for any woman facing a decision that will impact her ability to have children. That's because only one company holds the patents on the genes associated with breast and ovarian cancer and no one else can offer this kind of testing without its permission.

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."

The American Civil Liberties Union filed a lawsuit Tuesday charging that human genes by law cannot be patented and that such patents violate the First Amendment. The gene patents impede clinical testing and research. An ACLU-produced video released today lays out the case by telling the stories of researchers, clinicians and individual women negatively affected by the patents. The ACLU has launched the video, "Liberate the Breast Cancer Genes," on its Web site and YouTube channel to help people understand how this lawsuit directly touches people's lives. The stories of Girard and Ceriani, who are plaintiffs in the case, are featured in the video.

"How can it be that a company controls genes? How is that possible?" asks Barbara Brenner, Director of Breast Cancer Action, one of the plaintiffs in the lawsuit.

The video outlines the problems experienced as a result of the U.S Patent and Trademark Office granting Myriad Genetics patents on the BRCA1 and BRCA2 genes.

Dr. Wendy Chung, Director of Clinical Genetics at Columbia University and a 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 their significance and others are excluded from doing the testing, 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 are 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."

The ACLU expects these gene patents will be declared invalid as a result of this lawsuit.

The video "Liberate the Breast Cancer Genes" can be found at the following links:
YouTube
www.youtube.com/watch?v=6h6X46-qz14

ACLU blog
http://blog.aclu.org/2009/05/13/liberate-the-breast-cancer-genes

More information about the ACLU's lawsuit can be found online at: www.aclu.org/brca
http://blog.aclu.org/2009/05/13/liberate-the-breast-cancer-genes

Press Contacts:
Maria Archuleta
(212) 519-7808
Rachel Myers
(212) 549-2689