By now, various writers from a host of news media outlets have reported on the unanimous Supreme Court decision that was released some two weeks ago on Association of Molecular Pathology vs. Myriad Genetics. Since then, there has been no shortage of celebratory press releases from the breast/ovarian cancer support community, stock analyses of Myriad Genetics by Wall Street gurus, or didactic reviews of Justice Thomas's opinion from legal experts.
While the Supreme Court has brought clarity to a patent issue that affects the biotech industry, pharmaceutical companies, and physicians and hospitals everywhere, there is one question that has yet to receive the necessary attention: What will happen to the invaluable data Myriad has collected over the course of its monopoly?
Prior to June's ruling, Myriad had the sole rights to the BRCA1 and BRCA2 genes. Since mutations in those genes lead to an increased risk of breast and ovarian cancer, this enabled Myriad to be the only U.S. provider of genetic diagnostic tests for such ailments.
More than 15 years later and with millions of tests under its belt, Myriad has compiled the most extensive genetic database on BRCA1 and BRCA2 variants in the U.S. Since genes associated with disease may have hundreds or even thousands of variants, the genetic information Myriad has amassed is crucial to distinguishing cancer-causing mutations from mutations of unknown significance. Furthermore, the database could provide tremendous aid to cancer researchers in their quest for more knowledge and more effective treatments.
Yet Myriad has tightly guarded the data as trade secrets, unabashedly putting profits ahead of patients.
In the wake of the Supreme Court decision, various companies have begun chipping away at Myriad's monopoly on BRCA tests. However, with more than a 15-year late start and no access to Myriad's database, these companies simply cannot offer results as reliable as Myriad.
Despite the fact that human lives are at stake, despite the fact that Myriad's head start was based on a monopoly it shouldn't have had, and despite the fact that it's irresponsible, unethical, and impeding scientific advancement, Myriad will continue to tightly clinch its proprietary database.
Yet we don't have to sit helplessly as corporate greed shoves human well being to the backseat. Policymakers, advocacy organizations, concerned citizens, and academic centers have come together to start the Free the Data! initiative. In hopes of filling "the public information gap caused by the lack of available genetic information for the BRCA1 and BRCA2 genes," Free the Data! invites those who've been tested to upload their reports, share their variants with the public, and control their own privacy settings. All shared data will be incorporated into the ClinVar database of the National Center for Biotechnology Information, which is a part of the National Institute of Health (NIH).
As we move to the uncharted junction of genetics and medicine, we need to recognize that transparency and freedom of information will improve quality of care, reduce costs, and lead to a better, healthier world for everyone.