ACLU files complaint against company that withheld genetic information from consumers

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Four people with a family history of cancer, or who have cancer themselves, lodged a complaint this afternoon with the U.S. Department of Human Services (HHS). It alleges that Myriad Genetics, a prominent genetic testing company, broke a federal rule by withholding genomic data that is rightfully theirs. At least one plaintiff wants to share her information with an open-access research database, to which Myriad has declined to contribute.

In a twist, after the American Civil Liberties Union (ACLU) notified journalists of an upcoming press conference on the matter, Myriad reversed course and supplied the patients with the information they had requested in February. Despite that move, ACLU went ahead and helped the patients file the complaint, in part because it covers what the organization describes as a past violation.

A spokesperson for Myriad, based in Salt Lake City, Utah, says that the company is frustrated by the complaint and believes it should be dropped.


Genetic testing labs, including Myriad, normally provide clients with information on gene variants that are known to increase the risk of disease (pathogenic), likely to be pathogenic, or of uncertain significance. But nearly everyone also has variants that are deemed benign—and companies typically don’t send clients information about those variants.

Read full, original post: After a prominent gene-testing firm declined to give patients their complete data, ACLU filed a legal complaint

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