Gene patents may seem like an unusual women’s health concern. But some of the many patents that have been granted on human genes significantly limit access to genetic tests that may be critical for women’s health.
The most notorious of these patents is the one held by Myriad Genetics on the BRCA1 and BRCA2 genes. Women with certain mutations of these genes have an increased risk of breast and ovarian cancer, but Myriad’s patents may prevent them from getting the essential information they need to minimize their risk and guard their health. On March 29, 2010, a federal judge struck down patents held by Myriad Genetics on the two BRCA genes. The case is now on appeal, and may eventually be heard by the U.S. Supreme Court. PCARR and other women’s health advocates have filed an amicus brief in that case.
Myriad Genetics’ patents on the BRCA1 and BRCA2 genes mean that it has an exclusive right to the actual gene itself, giving the company control over the price of the diagnostic test, the test results, and additional research into who carries these genes, and how they affect women’s cancer. Unfortunately, many women cannot afford the BRCA1 and BRCA2 diagnostic test. A number of insurance plans do not cover the test, and the price tag of $4,040 makes the test simply too expensive for most women to pay out of pocket. In addition, because Myriad only allows one laboratory in the United States to provide the clinical full sequencing of the BRCA1 and 2 genes, preventing women from getting a second opinion.
Myriad’s patents of the BRCA1 and BRCA2 genes have implications for scientific research as well. The company’s exclusive control of the genes has stifled research into variants of the BRCA1 and BRCA2 genes that appear to occur primarily in women of color. The current test does not detect these variants. Unless Myriad Genetics chooses to pursue research of these additional mutations, women of color will continue to be denied access to vital information about their health.
Private control of our own genetic information is a 21st century civil rights issue. A challenge to the trend of institutional ownership of private information that should be part of what the United Nations calls the “common heritage of humanity.”