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Court Battle: Who Owns Your Genes?

4:26 PM, Nov 28, 2011   |    comments
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JACKSONVILLE, Fla. -- They make us who we are - the story of our heredity.

Genes, 25,000 of them, populate our bodies, and are now the subject of a court battle.

"I decided to join the lawsuit because I think it's fundamentally wrong to own a part of the body," said Genae Girrard, one of six patients suing the federal government for issuing a patent on the BRCA1 and BRCA2 breast cancer genes.

She has a website where breast cancer patients connect on the issue."Our constitution says that it is fundamentally wrong to own something that exists in nature," she said.

So how did a company called Myriad Genetics secure a patent?

"They do own a patent but theoretically it's the way to test BRCA1 and BRCA2. The big debate is whether they are actually patenting biological material or not."

Maegan Roberts, a genetic counselor for Mayo Clinic, said her job is to assess risk for those gene mutations and recommend patients for testing.

"The general population's risk for breast cancer by the age of 70 is 12 percent. For BRCA1 and BRCA2 carriers, it's 80 percent (over a ) lifetime," Roberts said.

Ovarian cancer risks increase by up to 44 percent among those who carry the mutations. Because of the patents, Myriad is the only company that can test for them, and monopolies are expensive.

"It costs $3,375 today for sequencing of genes. If further sequencing is necessary that's another $700, approximately $4,000 dollars," Roberts said.

Many insurance companies cover the test, but not all, and there are no second opinions available.

"You're trying to make the best decision you can for your body," said Girrard, who was seeking a second opinion. "You're going to have to make some decisions when you are five times more likely that are life changing. I wanted a second opinion and I couldn't get one because only one company offers the test."

Patients like Girrard aren't the only ones involved in the lawsuit.

Scientists who say the patents restrict their ability to research the genes are suing as well.

Companies like Myriad invest a great deal of money in their genetic work, and if the profit is taken out of the process that could impact research as well.

Initially the courts threw out the patents; the decision was then reversed on appeal.

MORE: Read about the lawsuit.   

 

MORE: Visit Genae Girrard's website.

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