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Myriad has also spurred acrimony with what some see as its failure to cooperate with the scientific community about BRCA. Myriad has sole access to a database of BRCA sequences that documents the minute variations that can make a change in the DNA of a BRCA gene dangerous. In 2004, Myriad stopped sharing that data with Breast Cancer Information Core, a breast cancer database run by the National Institutes of Health.
Chani Wiesman, a genetic counselor with Yeshiva University’s Program for Jewish Genetic Health and the Albert Einstein College of Medicine, said patent holders do not always choose to restrict who can use the patent. In the case of BRCA, Myriad limits how others perform the test for the gene and charges hefty royalties to those who do.
Wiesman says simple economics dictates that without the patents, the price of the tests would come down.
“If these genes were no longer under a patent, then more places would be able to do testing and it would be easier for patients to access this testing,” she said.
The issue of cost is no small matter. According to Sue Friedman, Executive Director of FORCE and a breast cancer survivor, the full panel of tests to detect the various and potentially dangerous mutations of the BRCA1 and BRCA2 genes can cost up to $3,400. The specific test that targets the mutations commonly found in Ashkenazi Jews is cheaper, running at roughly $500. Neither test is necessarily covered by insurance, leaving many women unaware of their status.
“As a hereditary breast cancer survivor, I am offended by that,” Friedman said.
Joanna Rudnick is a filmmaker whose 2008 documentary “In the Family” documented her efforts to grapple with difficult decisions after testing positive for the BRCA gene at age 27. She falls within the small group of Ashkenazi Jews whose BRCA1 mutation couldn’t have been detected as part of the traditional and cheaper test for common mutations. She was lucky enough to gain access to the full test that also looked for less common mutations. Otherwise she wouldn’t have been able to know she was at risk and to make the necessary decisions about her health.
She called Myriad’s patent on the BRCA gene a threat to scientific progress on a health threat looming over the entire Jewish community.
“There has been a chilling effect on many generations of Jewish families,” she said.
Outside the Supreme Court, Schlager was joined by her 12-year-old daughter, Rachel. The girl is working on breast cancer awareness as a mitzvah project for her upcoming bat mitzvah, emphasizing her own family history as well as the importance of the issue for the larger Jewish community.
Though Rachel is aware of her potential risk, testing for the BRCA gene isn’t recommended before a girl turns 18. And in any case, Schlager said she’s reluctant to get her daughter tested before she’s out of college.
“It’s a heavy piece of information for a young person,” she said. “She knows it runs in our family, and she knows that that’s why I’m involved, but she’s still developing, and I don’t want her to be fearful of her body. I want her to have some carefree years.”
Contact Anne Cohen at firstname.lastname@example.org