Angelina Jolie’s recent choice to undergo a double mastectomy because she carried the breast cancer gene has started a national conversation about preventative medicine and genetic testing.
Sheri Reed watched as her mother and over a dozen extended family members battled cancer. Her mother was the only one to survive. At 36 Reed decided to undergo a voluntary double mastectomy.
“I knew my entire life once I was done nursing my kids I would have the surgery,” said Reed. “The risk was so high with our family and the age people were getting diagnosed was younger and younger and I was already older than them.”
Kimberly Jewett also saw her grandmother and aunts struggle with breast cancer. At 31 she found out she had the disease.
“Being diagnosed so young was a shock. I don’t think anyone at 31 thinks cancer,” says Jewett. “It affected us from the stand point we weren’t done having children and that was difficult for us. But I think it’s also taught our family to no let cancer define us.”
Both women underwent genetic testing and the results were negative. About five to ten percent of women who get breast cancer carry the BRCA 1 or 2 gene that causes the disease.
“It’s like this black cloud that had followed my family around for so long is an identified storm,” says Reed. “And we took control and can minimize our risks. My ten year old will never have to see me go through what I watched my mom go through.”
“Most importantly for me it was the extra information of knowing whether I carried the gene,” says Jewett. “I have a young daughter and son and I wanted to know for their history as well. It was important information for me to have.”
The decision to undergo genetic testing is a personal one that includes a lot of different risk factors. One company, Myriad Genetics, is hoping to be the only company to be able to test for mutations. They hold an exclusive patent on BRCA 1 and 2 genes that cause mutations.
“As a human being it’s odd to think of something in nature being patented,” said Dr. Samir Undevia, who runs the Cancer Genetics and Risk Assement Program at Edward Hospital. “I think a shorter ten or 15 year patent that then expires might be a better middle ground.”
Myriad Genetics claims they are not trying to monopolize the genetic market, but insist their innovation should be rewarded. Not all patients support the idea of genetic patients, but are happy to have another tool in the fight against cancer.
The Supreme Court is expected to hear the case concerning Myriad Genetics at the end of June.
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