Did you know BRCA (breast cancer) gene is owned by a corporation?

This week, news reports headlined that Angelina Jolie’s aunt died from breast cancer. Watching “Entertainment Tonight” yesterday, my husband and I saw graphs and images of Jolie’s maternal family tree back to her great-great grandmother, tracked by an investigative journalist. We saw images of death certificates and who signed them. I was wondering why, with all of this incredibly deep, highly researched, investigative coverage we never hear anything about the terribly creepy story of who owns the BRCA gene. That’s right, owns it. The “breast cancer gene” mutation that Jolie tested positive for, a discovery that made her decide to undergo a double mastectomy, is the property of a corporation called Myriad Genetics.

The ACLU/ Breast Cancer Action is currently challenging Myriad Genetics and gene patenting:

Breast Cancer Action opposes human gene patenting. We believe it’s wrong for the government to give one company the power to dictate all scientific and medical uses of genes that each of us has in our bodies. We urgently need more and better options for the treatment and risk reduction of breast cancer, and we cannot afford to have progress stymied by the monopolies that gene patents create.

 

How did I get the story about the BRCA gene amidst all the Jolie coverage? From CNN, the New York Times, an entertainment show? No, from a Tweet on Peggy Orenstein’s feed:

Myriad genetics OWNS BRCA gene. OWNS it. That’s a block to research & better options for someone like Angelina Jolie

peggy-orenstein-bio

I follow Orenstein because I’m a huge fan of her book, CInderellla Ate My Daughter. Orenstein is also a breast cancer survivor, who, coincidentally, wrote an in depth story for New York Times MagazineOur Feel Good War on Breast Cancer” covering the corruption in breast cancer research, funding, and treatment published just a month before Jolie’s huge story broke.

Here’s something else we don’t hear about breast health that I learned from Orenstein’s blog:

I find that when I tell my friends that my reconstructed breast is numb they are shocked: they had no idea that would be so.

I’ve blogged before that breasts are secondary sex characteristics, but we hardly think of them that way any more in this culture. The value of breasts seems to be mostly the aesthetic and sexual pleasure of men. Almost as an afterthought, we realize that breasts exist to nurture babies. But what about recognzing that breasts are there for the sexual pleasure of women? Fake breasts are often numb breasts, and if you think about it, that’s about as asexual as you can get.

As I’ve blogged, Jolie made a viable choice. I admire her for speaking out publicly about what happened to her. When women tell their stories, it helps all women. But I hope that America takes advantage of this media coverage about breast health to find out more on the truth about cancer and treatment.

Last night, “Entertainment Tonight” showed images of Jolie’s two biological daughters, Shiloh and Vivienne, reporting that medical experts advise they get tested for BRCA at age 18. I hope Jolie works to give her daughters better options, continuing to speak out about the issues around breast health, and the problems that occur when a government allows a corporation to own genes. Americans need to know about it.

 

 

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