Should Myriad make breast cancer data available for clinical research?

Myriad Genetics may have lost its singular hold on the market for BRCA1 and BRCA2 testing in May 2013 when the Supreme Court ruled against the patenting of genes, but few outside the science and medical communities are aware that Myriad continues to possess a repository of patient data from BRCA testing that it does not share with researchers outside its own lab.

After testing for a genetic mutation related to BRCA, some people — around 3 to 7% of cases — receive the result “variant of uncertain significance.” This indicates that the lab found a genetic change that may be linked to cancer risks but was unable to determine whether the gene change is a “deleterious change,” which increases the risk for cancer, or a variant that does not. Until the Supreme Court ruling which allowed other labs to begin conducting BRCA testing, Myriad had been for 16 years the sole commercial provider in the United States collecting those variants, which are important tools for interpreting results. It stopped contributing those results to the public database Breast Information Core, the largest database for BRCA mutations, in 2004.

“This is not the way that most genetics work has taken place and the fact that they have data on these variants that are hard to interpret that they have not shared has generally been really disturbing to the medical community,” said Judy Garber, director of the Center for Cancer Genetics and Prevention at the Dana-Farber Cancer Institute.

Read the full, original story: Genetics lab refuses to share data that could save lives

 

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