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Myriad Genetics: It's Time to #FreeTheData

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The discovery of the breast cancer gene BRCA1 in 1994 was the result of decades of research by many scientists funded by many sources, including governmental agencies, private firms, and academic research centers. Thousands of patients donated their DNA and their family histories so that researchers could move forward.  Despite the inherently collaborative nature of the discovery, the University of Utah patented BRCA1, claiming both DNA and all methods of detecting variants, along with another high risk breast and ovarian cancer gene, BRCA2, discovered a year later. These patents have been central to the business model of the 1994 startup company Myriad Genetics, which is now publicly traded and reported a gross profit of $575.7 million in the 2015 fiscal year.

Myriad’s patents cast a shadow over breast cancer research for decades, and limited U.S. testing to a monopoly until the United States Supreme Court invalidated those patents in 2013.  Australia recently followed suit in an October 2015 High Court decision. For years, Myriad set the price of genetic testing for BRCA mutations, making it inaccessible to most who were uninsured and those whose insurance companies refused to pay for the test. They also controlled further testing on these genes, including the detection of large rearrangements and deletions in both genes, delaying the introduction of rearrangement testing by several years. This directly and negatively affected the health of low income women who unknowingly carried a genetic risk of up to 87% of contracting breast cancer, and up to 40% of ovarian cancer in their lifetimes. With the subsequent emergence of competing testing companies (and newer technology), the cost of BRCA testing has dropped dramatically.  Tests are now on the market for $199 (Veritas) and $249 (Color Genomics).

While many believed that the Supreme Court patent decision shattered the monopoly on BRCA genetic testing, Myriad has extended its monopoly in a new way, with serious consequences for understanding and even arriving at a clinical interpretation of BRCA variants. Based in large part on more than a million tests it conducted during its US patent monopoly 1998-2013, Myriad has amassed an enormous amount of genetic data. However, in 2004, Myriad stopped sharing its data, and its last major publication extended only through 2006.  Myriad continues to refuse to share data about BRCA variants with open clinical and research databases, ignoring pleas by oncologists, genetic counselors, public health officials, and consumers to contribute to the ongoing research.

Data about genetic mutations should not be ‘“trade secrets.” Myriad Genetics has built its business model around data hoarding, aiming to force consumers into using it over other genetic testing companies because they claim their tests are superior in discerning which variants confer risk. Put simply, Myriad is putting its own profit margin ahead of the health of BRCA+ patients.

We are calling upon Myriad Genetics to abandon this unethical way of doing genetic testing,  and to follow the example of other labs and share its BRCA and genetic data relevant to inherited risk of other cancers and other genes. We further call for consumers to actively choose not to use Myriad Genetics for genetic testing until it adopts a policy of sharing data with public databases.

We also call upon the Centers for Medicare and Medicaid Services (CMS) not to pay for tests that cannot be independently verified, and which are conducted by laboratories that treat data on genomic variants as proprietary assets.  And we call on organizations that accredit and certify laboratories, such as the College of American Pathologists and CMS (under the Clinical Laboratory Improvement Amendments of 1988) to establish policies that ensure that certification and accreditation depend on the ability to independently verify laboratory results. This necessarily entails deposit of data into public databases as well as replicable publication of interpretive methods and algorithms, as conditions for accreditation or certification.

In this new era of precision medicine, genetic testing will play an enormous role in the future of health care, and data sharing is a critical part of that. We can't let a company set this kind of precedent. We can't put profit before patients and the advancement of knowledge about the relationship between genetic mutations and life-threatening disease. Please sign this petition to send that message loud and clear.

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K Surkan needs your help with “Mark C. Capone, CEO of Myriad Genetics: Myriad Genetics: Give Us OUR Damn BRCA Data!”. Join K and 1,071 supporters today.