The patents granted to Myriad Genetics and the University of Utah Research Foundation (615 Arapeen Drive, Suite 310, Salt Lake City, UT 84108) give the company the exclusive right to perform diagnostic tests on the BRCA1 and BRCA2 genes and thus to control the medical care provided to hereditary breast and ovarian cancer patients and people at high risk for these diseases. Myriad's monopoly on the BRCA genes allows it to set the terms and cost of testing and makes it impossible for women to access alternate tests or get a comprehensive second opinion about their results. It also allows Myriad to prevent researchers from even looking at the genes without first getting permission from Myriad.
The restrictions on examining the BRCA genes can have devastating results. Kathleen Maxian of Buffalo, NY is suffering from late-stage ovarian cancer that she believes could have been prevented. Her sister, who is a breast cancer survivor, obtained a test from Myriad that did not look for all known genetic mutations associated with cancer and was told she was negative for mutations. Years later, her sister learned that she did, in fact, have a BRCA genetic mutation — information that Maxian could have relied on to seek preventive surgery. Numerous labs across the country have stated that they are capable of providing this comprehensive screening and would do so were it not for Myriad's patents.
"Women should not have to compromise their health because a private company controls their own genetic information," said Sandra Park, staff attorney with the ACLU Women's Rights Project. "Patients deserve the best available care, including access to testing and options for second opinions before making serious decisions about their health. These patents prevent them from getting that."
Lisbeth Ceriani, a breast cancer survivor and plaintiff in the case, was faced with having to pay over $4,000 for Myriad's testing to determine if she carried a genetic mutation associated with hereditary ovarian cancer because Myriad had refused to enter into a contract with her insurance company. She was forced to wait 18 months before she was able to obtain the test through a grant, at which point she learned she did indeed carry a mutation.
"No woman should have to go through what I went through to take care of herself and her family," said Ceriani. "My genes are my own. Knowledge about my own body shouldn't belong to a corporation."
The case is the first challenge brought to human gene patents in the US Attorneys on the case include Hansen, Park, Lenora M. Lapidus and Steven R. Shapiro of the ACLU; and Ravicher and Sabrina Hassan of PUBPAT.
For more information on this case, please visit: aclu.org/brca
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