FIRST PERSON | The Supreme Court announced on Nov. 30 that it plans to rule on the issue of gene patents. This stems from a case in 2010, when the American Civil Liberties Union (ACLU) took the drug research company Myriad Labs to court over its patent on the BRCA gene. The ACLU claims that naturally occurring genes should not be patented. Myriad Labs disagrees, stating that it will not be financially viable to conduct important medical research without the ability to patent.
To patent or not
CBS News reported that the Supreme Court plans to hear the case in early spring 2013. This will finally lay to rest the question as to whether human genes are patentable. It is not a simple question. Right now, only Myriad Labs can test or perform medical research on the BRCA genes. Researchers wishing to test the BRCA gene sequence must pay royalties to Myriad Labs.
The BRCA genes are an important sequence from a research standpoint. Certain mutations involving these genes leave women at high risk for breast, ovarian, and other cancers. The BRCA1 and BRCA2 gene mutations are at the heart of this legal battle. Testing for BRCA1 or BRCA2 is extremely expensive. Because Myriad Labs holds the patent, no other company can design a less expensive test.
I had genetic testing done because of my family history with breast cancer. It involved genetic counseling and a blood draw. Testing from Myriad Labs cost $5,000. Insurance paid for some of it, but I still had a significant amount to pay out of pocket. Women who receive Medicare, Medicaid, or those without insurance may not be able to afford the test -- leaving them without access to potentially life-saving medical information.
If you are BRCA positive, your risks for cancer skyrocket. Important decisions about your health care, including preventative surgical procedures, must be made. Sharing your BRCA status with immediate family members may impact important life decisions such as deciding to have children. This is why the ACLU sued.
Genes should not have patents
I had a diagnosis of breast cancer before undergoing genetic testing. It was important for me to share the test results with my family. Fortunately, my cancer is not BRCA1 or 2 related. This does not rule out my cancer being genetic. Here is the problem with Myriad Labs owning the patent on the gene: They are not looking for new mutations and no one else can undertake this important research without paying royalties to Myriad.
It would be different if Myriad Labs created a new gene. For that they should have a patent. But, for genes that occur naturally in the human body, patents should not be allowed. If the cancer in my family really is genetic, I should know. Until we have free and open access to all human gene sequences, Big Pharma is holding the human race hostage.
Lynda Altman was diagnosed with breast cancer in November 2011. She writes a series for Yahoo! Shine called "My Battle With Breast Cancer."
- breast cancer
- American Civil Liberties Union