When they're healthy, the two genes, BRCA1 and BRCA2, work to keep breast cells growing normally. But when they contain certain mutations, they can indicate that a woman has a 40-85 percent chance of developing cancer in her breasts or ovaries. Women with extensive family histories of cancer often choose to be screened for the mutations, since positive tests can indicate the need for precautionary measures such as more frequent mammograms or MRIs, prophylactic drugs or, in some cases, preventive mastectomies.
Even more important, many scientists believe that studying the genes could lead to better treatment of or a cure for the diseases, which are two of the most common forms of cancer in women. The hitch is that intellectual rights to the genes are legally owned by a company called Myriad Genetics, in conjunction with the University of Utah Research Foundation. Pharmaceutical companies like Myriad have argued that patenting genetic information promotes innovation by rewarding researchers for hefty financial investment. But patents also mean that no other company or scientist is allowed to study, look at or test the genes. Technically, it's even illegal to think about the connection between the genes and increased rates of cancer. So if I were to write, mutated BRCA1 genes cause breast cancer, I'd be waylaying anyone who reads this post into committing a patent infringement. (Mutated BRCA1 genes cause breast cancer -- ha! I did it again!)
Since Myriad won't license any other company to test the genes, a woman who screens positive for a dangerous mutation can't get a second opinion before making the decision to, say, remove her breasts and ovaries. And if she can't pay the $3000 Myriad charges for the test in the first place, that's just too bad. The New York Times quotes one such plaintiff in the ACLU lawsuit, a single mom who says that Myriad refused to work with her insurance company and that the test is beyond her means. She's already had breast cancer and a double mastectomy, but wants BRCA testing to determine her risk of ovarian cancer, and because she's worried about her 8-year-old daughter, who may have inherited any genetic abnormality: “I want to be here to make sure she does her screening by the time she’s 30.”
The case could have far-reaching implications, since the ACLU is arguing that all gene patents are unconstitutional. Currently, about 20 percent of the human genome is under patent -- a practice that patient advocacy groups argue is tantamount to biopharmaceutical bodysnatching. In a letter of support for the lawsuit, the Council for Responsible Genetics writes that patenting "has become the primary mechanism through which the private sector has advanced its claims to ownership over genes, proteins and entire organisms." Kind of takes that old pro-choice slogan to a new level.