In 2013, Myriad Genetic failed – in a case that was heard in the United
States Supreme Court – to patent the BRCA1 and BRCA2 genes. We all have
these two genes which, when they mutate, are associated with breast,
ovarian and prostate cancers.
If Myriad succeeded, they would have controlled patents on these genes and
could establish a monopoly on all research and testing of these genes.
Myriad is now facing a lawsuit over denying their clients access
to their own genetic information. The four plaintiffs in the action underwent genetic testing with Myriad to determine their hereditary risk and treatment options for breast, ovarian, and
The four plaintiffs asked Myriad for their full genetic
records, including genetic variants that Myriad identified as benign but
did not list in their test reports. Myriad initially refused, saying that
they are not required to give that information.
Though Myriad eventually capitulated, the plaintiffs are continuing their
action against the company. They argue that by having denied the
information to them, Myriad remains in violation of the Health Insurance
Portability and Accountability Act (HIPAA).
Myriad says that the legal action lacks merit and should be rejected by
the courts since they ultimately gave up the requested information.
According to Ken Deutsch, one of the plaintiffs in the case, the aim of
the lawsuit is to ensure that the company “gives access to all patients
who ask for their genetic information.” He said, “that as a cancer
patient, I am outraged that a lab could stop me or anyone else from seeing our own genetic information and sharing it with the scientific community.