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Coalition Launches Open BRCA Sharing Site, Seeks to 'Liberate' Test Data

NEW YORK (GenomeWeb News) – Just hours after the US Supreme Court ruled that Myriad Genetics' patent claims on the BRCA1 and BRCA2 genes were invalid, a group of partners launched an effort to enable individuals to contribute to knowledge about these genes by sharing their genetic information via large databases, Genetic Alliance said yesterday.

The aim of the Free the Data! initiative is to expand the pool of publicly available genetic information about these two genes, and other genes in the future, and make this information available in open databases, including the National Center for Biotechnology Information's ClinVar database.

Along with Genetic Alliance, the major partners in the initiative include the University of California, San Francisco, and the genetic testing lab InVitae.

Although the partners expect to see the use of genetic testing expand rapidly in the coming decade, in part because of the drop in cost of DNA sequencing and in part because of the Myriad ruling, there is currently no coordinated way for patients and physicians to share genetic results in ways that will help all patients, Genetic Alliance said.

This initiative seeks to do just that, enabling individuals to use their genetic test results to advance knowledge about how gene variation affects disease and to inform new translational research efforts.

"This effort enables individuals to contribute their information publicly, albeit with appropriate privacy and security protections through a customized portal that can be used by all patients and their clinicians in order to improve care," Genetic Alliance President and CEO Sharon Terry said in a statement.

Terry told GenomeWeb Daily News in an email that it was no coincidence that the project launched on the day of the Myriad decision, and called the ruling "fantastic."

"A company such as Myriad is, of course, free to keep the data that they generate. We are declaring that regardless of intellectual property, this data belongs in the public domain. Clinical care and research is advanced by this variation," Terry told GWDN. "Women (and men) have a right to share their data with whom they wish, when they wish. … We are calling for all tested individuals everywhere to liberate their data and build this movement to do so together."