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“Free the Data”—Undoing the Damage Caused by Gene Patents

by Lisa Schlager and Sue Friedman

Help FORCE "free the data" by uploading your genetic test results to be shared into a public database known as ClinVar.

About 3-7% of BRCA tests return with an inconclusive VUS result. The National Institutes of Health (NIH) sponsors a large database known as the Breast Information Core (BIC) for scientists to report the different variations in BRCA genes to try to unravel what they mean for cancer risk. Unfortunately, gene patents stifled progress in VUS interpretation. Myriad Genetics Laboratories held a monopoly on BRCA gene testing until 2013, when the U.S. Supreme Court ruled against gene patenting, allowing other laboratories to perform BRCA testing. The ruling, however, did not erase the negative impact of “data-hoarding.” The Genomics Law Report states that Myriad stopped contributing data to BIC in favor of building a private database to retain competitive advantage over other testing companies. This strategy has hurt BRCA testing interpretation and research.

In response to this issue, the NIH launched ClinVar, a public database that collects data for all hereditary disease gene variants and can be freely accessed by researchers, consumers, and biotechnical companies. ClinVar will enable researchers to study variants, assess their significance, and facilitate medical discoveries. All information is de-identified to ensure anonymity.

The “Free the Data” movement encourages people to share their genetic test results anonymously in ClinVar. Through the ABOUT Network, FORCE and the University of South Florida are providing people with a simple way to upload their BRCA test results (with all identification removed) into ClinVar. Visit the secure website at www.freethedata.us to contribute your lab report for the benefit of the community and help us free the data.

Lisa Schlager is the Vice President of Community Affairs and Public Policy for FORCE. Based in the Washington, D.C. area, she represents the HBOC community in the legislative, regulatory and research arenas.

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