About 20 percent of your genes are patented, meaning the companies that own those patents have the exclusive right to any testing and researching involving them. When it comes to the breast cancer genes, one company is under fire for putting a high price on potentially lifesaving information.
Carol Moulton was raised in an estrogen-filled home. One of three girls, they shared something more than the joys of sisterhood.
"Back in 1977 my mother was diagnosed with breast cancer. She had a single mastectomy and chemotherapy. I was 15 at the time. So it's pretty much been with me my whole life," said Moulton.
As the years went by, it turned out it wasn't just her mother. Her two sisters were also diagnosed with breast cancer.
Ever vigilant, Moulton got tested to see if she carried mutations of the breast cancer genes called BRCA 1 and 2. And just like the smiles and secrets shared among sisters, genes are a tie that bind.
Moulton had a preventative mastectomy after the test revealed she had an 87 percent chance of getting breast cancer.
"It was always in my mind. I was always aware so when I did test positive, I had my decision made. It was an easy decision to make."
The test for the breast cancer gene mutations is made by Myriad Genetics. It is the only company that makes the test because it has patented the genes.
"A patent is suppose to protect whoever invents something from other people stealing their invention and profiting from it," explained Glenn Simmington, a lawyer with the ACLU Great Flint branch.
Recently the ACLU took Myriad Genetics to court, saying you can't patent something that naturally occurs and by doing so they've held the scientific community and potential patients hostage.
"They had a monopoly on the use of the gene and on the testing and on the flow of information," said Simmington.
Myriad Genetics charges $3,000 for the test, and with no competition there is no pressure to lower the cost. Some insurance companies cover it and some do not.
It's a factor Hollywood heavy hitter Angelina Jolie pointed out in her New York Times essay where she revealed she too tested positive for the mutations that can lead to breast cancer.
But the United States Supreme Court just dealt the biotech company a huge blow. In a rare unanimous decision, the high court ruled just weeks ago that companies like Myriad cannot patent your genes.
"It not only allows the free flow of ideas but also the testing on the gene, so other companies may test and it should keep prices lower," said Simmington.
Moulton is thankful the test allowed her to stay a step ahead of cancer. It's a luxury her mother did not have and now she is now facing round two against the deadly disease.
"My mother who is 86 just found a lump in her one breast, she will be having a mastectomy in August," said Moulton.
So what does this mean for you? Now that Myriad does not have the exclusive right to the breast cancer genes, other companies will likely produce a test of their own bringing competition to the market. That should lower the price though it won't happen overnight.
Copyright WNEM 2013 (Meredith Corporation.) All rights reserved.
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