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Hidden Away

Ken Deutsch has battled bladder cancer, and his father and grandmother died of pancreatic cancer, writes Nikhil Swaminathan at Newsweek. After a second cousin died of ovarian cancer, Deutsch learned she had a rare BRCA1 mutation. Deutsch and his doctors sought BRCA testing from Myriad Genetics to find that he, too, has that rare BRCA1 variant.

But whether that variant is associated with increased bladder or pancreatic cancer is unknown, and Swaminathan writes could be because Myriad hasn't deposited data in a public database since the mid-2000s.

That's led, he adds, Deutsch and others to enlist the American Civil Liberties Union to file a complaint against Myriad with the US Department and Health and Human Services. After he was tested, Deutsch received a report with mutations known to be associated with cancer risk, and he subsequently requested his full data from the company. Swaminathan writes that Myriad initially declined to do so, saying patients were only entitled to their tests results, which sparked the ACLU to write its complaint that said the company was violating a HIPAA privacy rule.

Myriad's Ron Rogers tells Swaminathan that the company only then became aware of the HHS requirement to give patients access to data generated as part of a lab test if they want it. The company then provided that information, a day before the ACLU filed its complaint, Swaminathan says.

Rogers tells Swaminathan that the company considers that the end of the issue, though HHS is still reviewing the ACLU complaint. Deutsch, though, wonders what other data resides in Myriad's private database, Swaminathan says.

"We know that some BRCA1 or 2 variants are more likely to cause cancer than others," Deutsch says. "Which cancers which ones cause, there's not enough data to reliably be able to pinpoint that information. We don't know much about it," he adds, "because [Myriad is] holding on to the data."