You think you own the right to your own genetics, but actually someone else owns 20 percent of your genes.
How can that be? Biotech companies are snatching up the patent rights, giving them control over tests, therapies, even potential cures for genetic diseases.
Single mom Lisbeth Ceriani was diagnosed with an aggressive form of breast cancer at age 42, a sure sign genetics are in play.
"I felt like I had a ticking time bomb inside of me, and I really needed to know," said Ceriani.
After a bilateral mastectomy, Ceriani wanted to know her chances of getting cancer again.
The best way to find out: testing the BRCA1 and BRCA2 genes. If mutations are found, the risk of getting breast cancer is five times more likely. The risk of getting ovarian cancer is 40 times more likely. But the test is patented by a biotech company called Myriad Genetics.
"It's insane. It's my blood. It's my gene," said Ceriani.
Myriad Genetics charges $3,200 for the test. Some insurance policies cover it, but Myriad would not accept Ceriani's plan because it would not pay the full amount.
"They basically own those genes. If you want to look at a gene that's patented from your own genome, you have to pay a licensing fee to the patent holder," said genetics professor Steven Salzberg, Ph.D., University of Maryland.
Because Myriad owns the rights, no one else can legally test the BRCA genes without Myriad's consent. But Salzberg says you cannot patent nature.
"You didn't invent it. The genes that you're patentin are a product of nature," said Salzberg.
Myriad refused an on-camera interview but in an email Myriad says the claims under the BRCA patents to isolated DNA and method claims are patent-eligible subject matter. It says isolated DNA is a chemical composition that is not found in nature or the human body.
After a year and a half, Ceriani did get the test, through grant money.
"It turned out I had a very rare mutation," said Ceriani.
To reduce her elevated cancer risk, Ceriani had her ovaries removed. She warns companies need to understand they're playing with people's lives.
"Stop looking at your bottom line and start looking at the women's faces and their children," said Ceriani.
Right now, it costs $10,000 to get your genome sequenced. But experts say in a few years, that cost will be less than $1,000. Then it will be possible to have your genes sequenced for all inherited mutations.
