Hoarding of patient data by genetics labs impedes patient care

epigenetics cancer

The GLP aggregated and excerpted this blog/article to reflect the diversity of news, opinion and analysis.

After [experiencing a sharp pain along his spine], [Ken Deutsch] was eventually diagnosed with Stage I bladder cancer.

After hearing about his family history, Deutsch’s doctors ordered a diagnostic screening test for BRCA1 and BRCA2 mutations made by Myriad Genetics[.] The test showed he has the same mutation as his second cousin[.] [Deutsch] was frustrated to learn that Myriad doesn’t share its data.


This isn’t the first time the ACLU has taken on Myriad.

“Myriad’s temporary monopoly allowed it to amass an enormous proprietary database,” [says Tania Simoncelli]. “Since the mid-2000s, Myriad has not shared its data with public databases.”


As part of [Cancer Moonshot], scientists, universities, grassroots organizations and institutions…have pledged to build portals to quickly and widely disseminate data on genetic tests, treatment responses, personal experiences and more.

“Which cancers which [BRCA variant] cause, there’s not enough data to reliably be able to pinpoint that information. We don’t know much about it,” [Deutsch says], “because [Myriad is] holding on to the data.”

Read full, original post: Genetics Labs Hoarding Cancer Patient Data Could Be Impeding Care

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