A corporation owns my genes — and yours

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By Runi Limary, breast cancer survivor and co-plaintiff on Myriad Genetics lawsuit

Seven years ago, when I was just 28, I was diagnosed with breast cancer. Four years ago, I joined the lawsuit challenging Myriad Genetics’ right to own the “breast cancer genes,” BRCA 1 and 2, which we all have in our bodies.

I believe patenting human genes is wrong. I’m proud to stand alongside Breast Cancer Action in this landmark lawsuit that will be heard by the Supreme Court this spring.

I joined the lawsuit against Myriad for two simple reasons:

  • I couldn’t afford to pay the $3,000 cost of the test. Myriad owns the patent, so Myriad gets to set the price tag. I’m not the only woman who can’t afford such an expensive test. And I’m not the only woman whose insurance refused to cover it.
  • When I was finally able to get insurance to cover the test, Myriad told me I have a “variant of uncertain significance” in my genes. I may have an increased risk of breast and ovarian cancer – or, then again, I may not. Women of color get these ambiguous test results most often and no one can do research to better understand why, or provide women like me with a second opinion because Myriad owns the gene patent.

If you believe corporate patents on human genes are wrong, please make a generous donation to support Breast Cancer Action’s work to end gene patenting.

Women who test positive for certain mutations on the BRCA genes have a high risk of developing breast and ovarian cancer. After my breast cancer diagnosis, I needed information about my body to make important health decisions: Should I have a preventative mastectomy on my non-cancerous breast? Should I get my ovaries removed, even though I’m in my 30s and do not yet have children?

I can’t make educated decisions about my health and my future when a biotech corporation is blocking essential access to information about my own body. Thousands of women are in this impossible position because Myriad owns the patent on our genes.

There is a lot at stake for me personally in this case. But I joined the suit because there’s a lot at stake for all of us. Overturning Myriad’s patent on our genes matters for people living with and at risk of breast cancer as well as anyone who believes that corporations shouldn’t own our genes.

If—and I like to think when—the Supreme Court overturns Myriad’s right to own our genes, we’ll see important wins for women living with and at risk of breast cancer:

  • The test will be less expensive;
  • Women will have access to second opinions;
  • Critical research currently blocked by Myriad’s monopoly can happen.

I’m honored to stand alongside BCAction as we take this important case to the Supreme Court. I hope you’ll make a donation to support their fearless advocacy for women’s health.

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