Who Gets to Control Women's Bodies? - Pacific Standard

Who Gets to Control Women's Bodies?

Angelina Jolie's op-ed about her decision to undergo a double mastectomy will inspire women to consider preventive surgeries, but it neglects to mention the controversial politics behind the test that uncovered her risk for breast cancer.
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We’ve always had much to be thankful for in regard to Angelina Jolie’s body parts, but never more so than when they go missing. Breast cancer has many high-profile activists, but the BRCA genes themselves? Not so much. These genes are vital tumor suppressors when they work correctly. As Jolie rightly points out in her New York Times op-ed, women who inherit mutations to their BRCA1 or BRCA2 gene have, on average, a 45 to 65 percent lifetime risk for breast cancer and an 11-39 percent risk of ovarian cancer. (Incidentally, men who inherit the variants are at higher risk for breast, pancreatic, and prostate cancers.)

I have two grandmothers and a great-grandmother who died of breast or ovarian cancer. My genetic counselor and I both thought I should get tested for the BRCA genes, but my insurance carrier disagreed.

In total, only about 10 percent of breast cancers are believed to stem from a heritable gene flaw, and most of them are not even in the BRCA genes. The faulty BRCA genes are among the deadliest, but they are relatively rare, occurring in about one person in every 500. They are most common in Ashkenazi Jews, where they occur in one in 40. Some mutations have been carried through families for centuries, such as one known to have arisen in Iceland in the 16th century. There are about 700 other distinct cancer-causing BRCA variants among Dutch, German, French, Italian, British, Pakistani, and French-Canadian populations.

With odds like BRCA’s, it makes sense for women who have a strong family history of breast or ovarian cancer to get tested, soon, and then consider both a mastectomy and an ovariectomy if the results warrant them. With Jolie out there talking up her nipple-sparing solution, many more women will be inspired to consider preventive surgeries and potentially extend their lifetimes by decades. But while Jolie nods to the high cost of BRCA testing, she neglects to mention the politics behind this test, and it’s a critical piece of the conversation.

Although they reside in our bodies, the BRCA genes are effectively owned by a bio-tech giant, Myriad Genetics, which patented the genes in the mid-1990s. Should a single corporation control access to DNA that exists in every human cell? Numerous scientific organizations and consumer health groups have decried the patents, saying they restrict critical research and prevent many women from having access to the tests. The patents also mean women can’t seek second opinions from other labs and they mean that the BRCA genes must be excluded from other more comprehensive test panels, which are offered elsewhere for much less money. The company argued before the U.S. Supreme Court last month that the patents are appropriate because of its technology used to isolate and analyze the genes, and that without patent protection it would not be able to recoup its research development costs.

Presumably, Jolie’s insurance paid for her test because her mother died of ovarian cancer. I have two grandmothers and a great-grandmother who died of breast or ovarian cancer. My genetic counselor and I both thought I should get tested for the BRCA genes, but my insurance carrier disagreed. At around $3,000, Myriad’s test is too expensive for me and most other women to get, regardless of what they and their doctors may think. The justices have not yet ruled on the Myriad case, but the decision will have dramatic implications for women’s bodies and who gets to control them.

It’s great to have Jolie add breasts to her activism agenda, but if she wants to help greater numbers of women at risk from cancer, she needs to go much farther. Let’s hope she will.