Fighting for everyone's genes

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Imagine a world where some big corporation owns the rights to your DNA. Sound unlikely? It is now, but until recently, Myriad Genetics had patents on two genes. The company gained control of BRCA1 and BRCA2 in the mid-1990s.

“We could no longer test our own patients for inherited breast and ovarian cancer risk,” Ellen Matloff ’91 told in June. Matloff is director of the Cancer Genetic Counseling Program at Yale Cancer Center. “All samples nationwide had to be sent to Myriad—an unprecedented genetic monopoly had been born.”

 Ellen Matloff  '91

This pushed the cost of testing from $1,600 to $4,000. Women who carry BRCA mutations have a lifetime risk of developing cancer that’s 85 percent (breast) and 60 percent (ovarian) greater than women who don’t. And many of them, Matloff said, couldn’t afford this price.

It wasn’t a reality she could live with. When the U.S. Supreme Court accepted the case, Association of Molecular Pathology v. Myriad Genetics, April 15, 2013, she was there.

“I agreed to be a plaintiff, against advice from all of my most trusted advisors, because I could simply not say no,” Matloff said in an email. “Someone had to put their neck out, and I realized it would have to be me.”

The court ruled unanimously against Myriad June 13, 2013, supporting the plaintiffs’ argument that genes are natural and therefore not patentable. BRCA testing, now offered by many companies, costs about $2,000 and is expected to continue falling.

“We all have DNA, so this impacts each of us,” Matloff said. “Soon, truly personalized medicine will be an option. People could opt for testing at age 20 that will guide when they have their first colonoscopy, mammogram or echocardiogram. If each gene were patented and cost $4,000 a pop, this would never happen—we have about 30,000 genes.”

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