June 20, 2013
Genae Girard is a breast cancer survivor, an author and also a consultant for patient advocacy. She was diagnosed with breast cancer at the early age of 36. Girard’s oncologist showed her a frightening, but mandatory video encouraging and arguably demanding that she get the BRCA gene testing. Girard proceeded with her doctor’s recommendation and turned to a company called Myriad Genetics, Inc. located in Salt Lake City, Utah that specializes in gene testing. With help from a team of experts from the University of Utah, Myriad Genetics developed a test with the ability to identify two mutated genes called BRCA1 and BRCA2.
A fact sheet from The National Cancer Institute claims the presence of these mutated genes determines a person’s risk for breast and ovarian cancer. This particular topic has recently gained momentum after Hollywood actress Angelina Jolie underwent a double mastectomy once discovering she carried the mutated genes.
The patents allowed Myriad Genetics to create a monopoly on the gene testing, prohibiting other companies from administering the cancer predicting tests. When asked about this monopoly Girard said: “The fact that one company has the ability to bank all of our breast cancer data is a really big deal. That retards research in so many different ways and we can’t get that back, they own all of that information.”
Sadly, Girard tested positive for the BRCA2 gene mutation but was unable to seek a second opinion because of the company’s restrictive gene patents. Adding even more heartache to her situation, the insurance company wouldn’t cover the costs for a second test, which averages a whopping $4,500. After several failed attempts at obtaining a second opinion, Girard made the difficult decision to have both her breasts and ovaries removed based on the results of one exclusive test.
Feeling burned by the company’s patents, and being forced to make life altering decisions on just one test, Girard and five others sued Myriad Genetics claiming no company should have patent rights on an individual’s genes. The American Civil Liberties Union (ACLU) acted as the governing body on the case, representing the women under the Women’s Rights Project. The ACLU researched a pool of candidates and selected six women based on a diverse set of problems they each experienced with Myriad.
After devoting more than two and a half years of their lives to fighting patents that were granted illegally, a major victory came for the plaintiffs last Thursday. In the case titled Association for Molecular Pathology v. Myriad Genetics, the Supreme Court released a written decision by the Justice Department ruling that DNA is a product of nature, ending the two-decade long monopoly on the tests. However, the court ruled that synthetic DNA, or cDNA that’s man-made or manufactured in a laboratory, can be legally patented.
In a 2005 study, the ACLU reported that more than 4,382 of the 23,688 human genes in the National Center for Biotechnology Information’s gene database are patented. This means that nearly 20 percent of discovered human genes are claimed as intellectual property by privatized government funded companies and public universities.
For the last 20 years, the patents owned by Myriad Genetics has prevented other companies from studying these mutated genes allowing the company to hold exclusive rights over the mutations along those particular genes. So far, nearly 2,000 distinct gene mutations and sequence variations have been discovered along the BRCA1 and BRCA2 genes, but further studies have been halted by previous patents leaving the significance unknown.
A study published in the US National Library of Medicine shows that glyphosate, a chemical weed killer that’s regularly used on genetically-engineered crops, can act as an endocrine disruptor. Endocrine disruptors are chemicals that can potentially interfere with the hormone system in mammals.
These particular chemical exposures increase the number of breast cancer cells through cell growth and cell division. Girard says she believes there’s high amounts of estrogen floating around in many different places including our food, water and physical environment. She believes that feeding cows and pigs a corn fed diet versus a grass fed diet has created an increase in the fat content consumed in human foods.
The Supreme Court’s recent ruling on this matter is a game changer for the medical industry. To start, removing these patents will open up the testing for competitors to participate, meaning doctors won’t be forced to rely solely on Myriad’s test. Opening up the market for competition will allow test pricing to decrease substantially, ending the extensive legalities and in turn increasing product development.
Even the inventor behind it all, Mary-Claire King, who first discovered the BRCA1 gene is on board with the Supreme Court’s ruling. When asked about her reaction to the court’s ruling, Mary-Claire King said “I am delighted, this is a fabulous result for patients, physicians, scientists, and common sense. When I was working on it from 1974 to 1994, it did not cross my mind that a legal case that would end up in the Supreme Court would be the consequence of my work. But it did, and sometimes that’s what happens when you start in a new area of science. It’s a relief to have a decision after so many years, and I’m so gratified that it was a unanimous decision.”
Amazingly, Girard has turned a devastating and potentially deadly situation into a powerful movement for individuals’ rights. Not only has her movement helped women across the globe, but it’s transformed the choices women can make when faced with a cancer diagnosis.
Since her life changing diagnosis, Girard has started a breast cancer group called Beyond the Boobie Trap that focuses on educating, encouraging and empowering women dealing with breast and ovarian cancer. Girard also released a book titled “Off the Rack, Chronicles of a Thirty-Something, Single, Breast Cancer Survivor” in which she shares her personal journey as a breast cancer survivor. Until recently she operated a Facebook page that attracted more than 2.1 million interactions per month, but it was shut down due to Facebook’s claims that her interactions were becoming a medical liability.
Thankfully for advocates like Genae Girard and Mary-Claire King, Myriad Genetics has been forced to release its exclusive grip on gene testing technology. As the never-ending advancements in medical technology progresses, the fight for preserving human rights will surely continue, leaving it up to the public to act as watchdogs against government funded corporatism.