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Angelina Jolie’s double mastectomy calls attention to limits others have in controlling their fate.
Monday, May 20, 2013
Angelina Jolie disclosed to the world last week in a New York Times op-ed that she had both of her breasts removed out of a very real concern that they would one day kill her. At a young age, Jolie’s mother had breast cancer and died of ovarian cancer, as did her mother before her. Family history clues that their cancer, like a small percentage of breast and ovarian cancers, was triggered by a genetic defect.
Jolie learned that she, too, had a defect on what is called the BRCA1, or breast cancer 1, gene, meaning that she had an 87 percent chance of developing breast cancer and a 50 percent chance of developing ovarian cancer. Those are terrible odds, but in knowing them, Jolie writes, she was empowered to flip them.
Not all women who should have that information get it. The genetic tests of the BRCA1 and BRCA2 are expensive, more than $3,000, and insurance may not cover it then. While critics say the actual test costs just $200 to perform, there is no room to negotiate price because one company, Myriad Genetics, holds the patent. Not a patent on the tests, but on the genes themselves.
Next month, the Supreme Court will decide whether Myriad can patent a gene that occurs naturally in every cell in every human body. Genes are a part of nature, and nature cannot be patented. But Myriad claims that it isolated the genes, snipping them from a long strand, and therefore should be awarded a patent for its ingenuity.
Myriad is not alone in calling dibs on genes. The U.S. Patent Office reportedly has granted companies and universities patents on 4,000 genes, meaning the court’s ruling will have a huge impact on researchers.
Patent holders argue research will grind to a halt if there is not a financial benefit that a patent guarantees. Opponents counter that research already is stymied because scientists cannot work with patented genes or coordinate their work with other institutions so they all could better understand a disease to develop better testing and treatments.
Plus, when there is but one company and one test, there is no way to determine the reliability or seek a second opinion, so vital when a woman considers the necessity of a preventive double mastectomy.
Progress in the work to treat many diseases, not just breast cancer, is slower than it should be when companies are granted ownership of body parts.
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