On Tuesday, Angelina Jolie wrote an emotional op-ed for The New York Times about her decision to have a preventive double mastectomy. Jolie’s decision came after she underwent genetic testing that indicated she was a carrier of certain genes that put her at a greater risk for developing aggressive breast cancer. Detecting these genes—known as BRCA1 and BRCA2—can be a crucial first step in preventing breast and ovarian cancers for women who have a family history of those diseases. But you’re gonna need some serious Jolie-bucks to find out if you’ve got the faulty genes.
Things that exist inside of your body are usually, you know, yours. But the BRCA1 and BRCA2 genes actually “belong” to a company called Myriad Genetics, which patented the genes in the late 1990s—truly the salad days of creepy science. Myriad didn’t patent the testing procedure or the method of extraction, but the genes themselves. These patents allow the company to control research on BRCA1 and BRCA2, set the price of the testing, and locations of their labs. Jolie herself points out that steps must be taken to ensure that all women have access to genetic testing, since at the moment it’s totally cost-prohibitive for those women who are not Angelina Jolie. Because that gilded billiards room in the party yacht isn’t going to pay for itself, Myriad charges anywhere from $3,000 to $4,000 for the test.
Last fiscal quarter, Myriad raked in $126 million dollars from genetic testing for breast cancer (85% of their total revenue!). Jolie’s piece on her genetic testing and subsequent surgery was a windfall for the company—Myriad can finally swap out the 4-ply for one hundred dollar bills in the executive bathrooms. (And it’s not just Myriad. About 20% of our genes have already been patented, potentially creating financial impediments for those whose diseases might be prevented through genetic testing.) It’s just like your conservative Uncle Larry always says, “Let private enterprise provide life-saving medical services, because I fucking hate poor people and women!” CAPITALISM GUITAR RIFF!
But those rabble-rousers over at the ACLU think this whole gene patent thing is messed up, and have filed suit against Myriad. The Supreme Court heard oral arguments in the case this past April. The ACLU argued that Myriad’s patents are unconstitutional, because generally speaking, you can’t patent something that is a “product of nature.” For something to be patentable, it needs to involve “human ingenuity.” Here’s an example: let’s say you’re an old-timey prospector hopping around in the river in your long johns (with a back hatch, doy) and overalls. You love panning for gold but hate when your beard hairs get yanked out after getting stuck in the pan. You create a special pan that helps you find all the gold while still maintaining the integrity of your chin curtain. You can patent your special pan, but you can’t patent the gold that you find, because gold is a nature thing, not an invention thing. The same idea applies to genes—because BRCA1 and BRCA2 are made by nature, and were not created by Myriad, the ACLU doesn’t think the genes are patentable.
Myriad, of course, disagrees. It argued that its patents are legit because it isolated the genes outside of the human body, which the company thinks is enough to meet the “ingenuity” threshold. Plus, they totally want to keep drinking champagne out of diamond-encrusted woolly mammoth tusks, so please don’t harsh their mellow, SCOTUS! For their part, the Supreme Court justices were mostly all, “Duhhhh, science?” because lawyers are useless dummies who know nothing, Jon Snow.
Ultimately, Myriad’s approach makes life more difficult not just for women hoping to prevent cancer, but groups of geneticists, pathologists, and other scientific researchers who are eager to study BRCA1 and BRCA2 for a cure or for alternative testing methods. The whole point of patenting is to encourage discovery and invention by allowing those who hold patents to retain exclusive rights over their invention. Instead, Myriad has blocked these pursuits by refusing access to BRCA1 and BRCA2—including researchers who could determine whether certain gene mutations are more common in minority groups. As a result, Myriad’s monopoly on genetic testing for breast and ovarian cancer has only made it more difficult for women to make choices about their own health. Even women of means like Jolie can’t always get a second opinion after receiving the results of their genetic testing, because Myriad often prevents labs from running more tests. I mean, I don’t know, a second opinion might be useful when it comes to deciding whether or not to have parts of your body removed.
Although President Obama’s Affordable Care Act has expanded the number of preventive services that women can receive at no-cost (I just made a birth control milkshake, y’all), many women will still have to pay at least some of the cost for genetic testing, even with insurance. This disproportionately affects African-American, Latina, and poor women (women who are already at an increased risk of developing aggressive cancers) who are more likely to delay treatment because of the cost and are less likely to survive a cancer diagnosis.
Angelina Jolie made a courageous decision and absolutely deserves a standing ovation for her honesty and her inspiration. But every woman should have the chance to make that same choice without cost as a barrier. As long as Myriad Genetics holds patents for BRCA1 and BRCA2, it may be financially impossible for all women to get the testing that they need.
Meagan Hatcher-Mays is an unemployed graduate of Washington University Law School in Saint Louis. She does a significant amount of yelling on Twitter.
Image via Mopic/Shutterstock.