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Company Accused Of Denying People Their Own Genetic Info

Myriad Genetics, a biogenetic company, is accused of denying patients their own full genetic information required for medical reasons.

The ACLU said in a press release May 19 that Myriad had violated the Health Insurance Portability and Accountability Act (HIPAA), a law that is supposed to protect people's medical records.

The ACLU said that it filed a complaint against Myriad with the U.S. Department of Health and Human Services on behalf of four patients who had genetic testing done by Myriad to check their genetic risk and medical options for breast, ovarian and bladder cancers.

According to the ACLU, when the patients asked for their full genetic records from Myriad, the biotechnology company refused and said that the patients were not entitled to have that complete information about themselves.

The ACLU notes that Myriad did provide the full records to the patients after hearing about the legal action. However, the patients and the ACLU are continuing to pursue the legal complaint because Myriad will allegedly not admit that genetic information is included in a patient's "designated record set."

Myriad said in a press release May 19: "The Company believes it has complied with these requests and provided these four patients with their designated record set and all requested personal health information. Therefore, we believe the complaint lacks merit and should not be accepted."

"We believe the Company has acted appropriately, responsibly and in compliance with the laws and regulations governing patients' rights to access their genetic data," Richard Marsh, a lawyer for the company, stated.

"Our policy is that all patients who receive a test from Myriad can obtain their test results and records directly from the Company or through their healthcare provider," Marsh added.

Myriad previously had a patent on the human BRCA1 and BRCA2 genes, and the company filed lawsuits for patent-infringement against other labs that tested the genes in an effort to diagnose the risks of breast and ovarian cancers in patients.

However, the U.S. Supreme Court ruled against Myriad in 2013 and said the company could not patent human genes, which were created by nature, reported The New York Times.

Myriad continued legal action against companies that were testing the genes for reasons supposedly not invalidated by the high court's ruling, but those patent claims were ruled against by Court of Appeals for the Federal Circuit in 2015.

Sources: ACLU, Myriad, The New York Times / Photo credit: Plethrons/YouTube

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