Blog of Rights

My Genes Are My Own

By Lisbeth Ceriani, ACLU BRCA Plaintiff at 11:08am

When I was diagnosed with breast cancer, patent law was the last thing on my mind. Then again, I didn’t know that one company could have an exclusive right to the genetic information that could save my life.

I’ve always been a very healthy and active person. I am a vegetarian, never smoked and I confined the cocktails to the weekends. When I turned 40 I had my first mammogram. I followed the rules. 

Just after turning 41, I began experiencing occasional pain in my breasts. It felt like I was being struck with pins from the inside. I had a second mammogram and an ultrasound, which were both clean. The doctors sent me home assuring me that “cancer isn’t painful.” I wasn’t convinced, but I trusted they must know best. 

By the following winter, the pain increased. Instead of a pin-prick, it felt like a pinch. I examined myself and found there was definitely something there – something round and hard.  

I was diagnosed with bilateral stage IIA breast cancer in May of 2008 at age 42. It had been just 14 months since my last mammogram. As I had multiple tumors in both breasts, I underwent a double mastectomy followed by both chemotherapy and radiation. 

Based on my relatively young age, the pathology of the tumors and the speed of growth, it was suggested that I might have a genetic mutation. Two genetic counselors and my oncologist all agreed that I should have what is known as a BRAC Analysis Rearrangement Test (BART), a BRCA genetic test performed by a company called Myriad Genetics. 

A mutation in either BRCA gene significantly increases the risk of developing ovarian cancer, especially in women who have already been diagnosed with breast cancer. Unfortunately, there are currently no effective methods of screening for ovarian cancer. I was advised that if I carried a mutation in either of the BRCA1 or BRCA2 genes, I should undergo surgery to remove my ovaries. BRCA genetic testing was essential to determining my best course of treatment.

Myriad is the only lab in the country that performs BRCA genetic testing, not because other labs lack the expertise to conduct testing, but because Myriad holds patents on the BRCA genes. Although my health insurance documented that it will cover the test, Myriad has chosen not to accept my insurance. Since I could not afford the nearly $4,000 cost of the test myself, I was left without the information I needed to make an informed decision about my medical care.

The consequences of gene patents are serious for all of us.  Understanding our genetic risk can mean life or death. It can mean the difference between whether a woman will live to raise her children. No woman should have to go without this test, or be prevented from getting a second opinion, because a corporation claims to own a piece of her DNA.

This is why I joined with the American Civil Liberties Union, the Public Patent Foundation, other patients, geneticists and medical professionals to challenge Myriad’s patents on the genes in court. It’s absurd to think that a corporation controls a part of my body, and can stop other scientists from offering a more affordable or different test, or from even looking at my own DNA. 

Last year, a divided federal appeals court overturned a lower court that had voided Myriad’s patents. The U.S. Supreme Court vacated that decision and sent the case back for re-consideration after ruling in a similar case that patents cannot be issued on natural processes.

A year and a half after Myriad refused to accept my insurance; I was finally able to get the test through a grant. I learned that I do in fact have a rare mutation, and was able to take the steps necessary to protect my health. But many women are not so lucky. As long as Myriad holds a monopoly on the BRCA genes, there will be more women unable to get the information they need to make the best decisions for their health. 

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