A Genetic Counselor Explains How Gene Patents Harmed Her Patients

“A Genetic Counselor Explains How Gene Patents Harmed Her Patients.” By Ellen Matloff, MS, Yale Cancer Center, Breast Cancer Action.

Editor’s Note: On July 13, 2013, the Supreme Court ruled in our favor to overturn Myriad Genetics’ patents on the “breast cancer genes,” BRCA1 and BRCA2. We were proud to be the only breast cancer organization to join researchers, patients, and genetic counselors in this landmark lawsuit. We asked one of our incredible coplaintiffs, Ellen Matloff, to explain how Myriad’s patents harmed her patients, and how things will be different for them in the wake of the Supreme Court’s landmark ruling.

I’m a board certified genetic counselor, and I came to Yale School of Medicine in September 1995, soon after graduate school, to start a program in cancer genetic counseling. The so-called “breast cancer genes,” BRCA1 and BRCA2, had not yet been found, but the forward-thinking director of Yale Cancer Center, Vincent DeVita, MD, knew that genetic links to cancer would be the wave of the future and recruited me to start a program from the ground up…A few years after the BRCA genes were discovered, I received a phone call from our lab director, who told me that Myriad Genetics had sent us a cease and desist letter. Myriad was strictly enforcing their patents, and we could no longer test our own patients for inherited cancer risk. All samples nationwide must be sent to Myriad Genetics. An unprecedented genetic monopoly had been born.

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