Many American women played the BRCA what-if game for the first time on Tuesday: what would I do if I had the mutation? Would I get a mastectomy, even though there was a chance I wouldn’t need it? Would I get an oophorectomy (the removal of the ovaries) even though it would propel me into early menopause? And if I chose not to get these surgeries, would I be able to live with the anxiety of knowing that I would probably get breast or ovarian cancer?
This is a thought experiment I’ve gotten pretty good at, because I am not exactly a neophyte what-ifer: I am the only woman in my family not to have a BRCA2 mutation. And even before I knew about the mutation, I worried about my risk: when I was ten years old, my mother was diagnosed with an invasive form of breast cancer at 37; she died ten years later in 1994, the same year Myriad Genetics filed its first BRCA patent. Before I took the test, while I waited for my test results, and even after I got them, I rehearsed how I would respond if I hadn’t been the lucky one with the intact copy of the BRCA gene.
It is exceedingly difficult to maintain a rational relationship to statistical risk. The classic example of this is the relative safety of flying as compared to driving: we all know that our odds of dying in a car accident far exceed our odds of perishing in a plane crash, and yet flying anxiety still outstrips driving anxiety by a wide margin. The BRCA gene mutations are poised to become the new fear of flying, as women who have a very low probability of a BRCA mutation now begin to worry that they are at risk.
Case in point: although I tested negative for the BRCA2 mutation five years ago, I now find myself worrying again that perhaps I should be retested. When my sister found that she had a BRCA2 mutation, my doctor advised me that I did not need the full sequencing for both BRCA1 and BRCA2, but could instead get the more limited test, which only evaluates areas of the BRCA2 gene already established as a the problem for my sister. Because it was less expensive to get the limited test rather than the full test, I went with the limited. Now I worry that this was a mistake. But I also know that my insurance carrier is unlikely to pay for a second round of testing, and that I cannot afford to pay the $3,000 required for the full test out of pocket.
The problem is that there is profit—a lot of profit—to be made from stoking all of this worry. The big winner on Tuesday was not women’s health; it was Myriad Genetics, the company that has held the exclusive patent on the BRCA 1 and 2 mutations since the 1990s. Because, in part, of Jolie’s well-intentioned but ambiguously worded exhortation for “every woman” to explore her risk, Myriad may well see a surge in business. And business is already booming: according to Karuna Jaggar, the Executive Director of Breast Cancer Action, “Myriad Genetics’ claim on our very DNA creates a profitable corporate monopoly for them, generating approximately half a billion dollars a year in revenue. In the last fiscal quarter alone, Myriad made $126 million off genetic testing for breast cancer—a full 85 percent of their total revenue.” Although the BRCA test could be easily performed by hundreds of US laboratories for as little as $200, Myriad’s patent prevents these more affordable tests from being performed.
The BRCA gene speaks to the impossible dilemma of for-profit healthcare, particularly when practiced as legal monopoly: some high-risk women will be saved, but many more women will be either needlessly alarmed, financially penalized, or both, so that one corporate monopoly can make a staggering profit. This does not seem like a good trade—or good healthcare policy—and it does not need to be this way.