Is Myriad hoarding patient data?

Myriad Genetics is perhaps best known for its ultimately failed defence of its patents on the BRCA1 and BRCA2 genes associated with elevated risk of breast cancer.  

A new article describes another way in which the company has offended some cancer patients, namely by keeping details of their test results a proprietary secret.  

Newsweek tells the story of Ken Deutsch, who suffered a close call with cancer that may be linked to a rare mutation of the BRCA1 gene.  Evidence for any linkage is scarce in the scientific literature, in part because there is so little data.  It is possible, indeed likely, that Myriad is in possession of data that is not in the public record.  However, they are not anxious to disclose it, even to the patients themselves:

“Their only defense,” Deutsch says, “is that they’re trying to hold data about individuals as...proprietary...so that they can make more money.”

Of course, the legal mandate of companies like Myriad is to make profits for shareholders.

Nevertheless, Deutsch successfully sued the company (or, the ACLU did on his behalf) under disclosure requirements with the Health Insurance Portability and Accountability Act.

Even so, Myriad is keeping other data close to its chest, making public research on conditions like that suffered by Mr. Deutsch all the more difficult.

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