I wrote this article for Slate’s Tech blog, Future Tense, after hearing about it from Joanna Rudnick, my close friend and one of the leaders of the project. You can see the article, which ran June 25, 2013 on Slate’s website here.
By now you’ve probably heard that, thanks to the Supreme Court, no one, and certainly not Myriad Genetics, can patent human genes. This decision was sensible and long overdue, but the celebrations have been short-lived. Because what you may not have heard is that Myriad still owns all of the information it has collected since the mid-1990s on the breast cancer genes—and it has no intention of releasing any of it.
Myriad’s interpretations of mutations are out there, but scattered in a million pieces—in the reports it has sent out to women, or, more often, to the clinical centers where they were tested. But a new volunteer grass-roots effort, led by a few women with a family history of breast cancer, is trying to Free the Data so that scientists everywhere can analyze it and help women make informed choices about their breast-cancer risk. In collaboration with the University of California-San Francisco, the nonprofit advocacy group Genetic Alliance, and a biotech company InVitae, these women are hoping to collect even a tiny fraction of the million or so reports Myriad has sent out over the past 17 years.