By Erica Concors, BCAction member
When I was 19, everything changed. I still remember my lack of surprise when the phone rang and the doctor told me my results. I was officially positive for a “deleterious mutation” of my BRCA 1 gene, and my lifetime risk for getting breast cancer was, and remains, 87%. As I’d guessed, I was now one in a long a line of BRCA1-positive women in my family.
Two years earlier, my aunt Tami found a small lump in her breast. She had never heard of BRCA (she always pronounced it Brayh-kah) and was only a few months late for her routine mammogram. After the cancer was confirmed, my mom, a never-ending Googler and typical Type-A mother hen, feverishly began her online research into the world of breast cancer, chemotherapy treatments, research trials, food plans, and horror stories. Down the rabbit hole she went. When she eventually stumbled upon an article that mentioned Jewish women sometimes had this thing (she called it a “thing” in the early days, before we all became makeshift genetic counselors) called a BRCA 1 mutation. That’s what she called it when she quietly mentioned it in passing during a phone conversation we had my freshman year of college. My life’s two biggest concerns were my biology final and my aunt’s health, so I quickly changed the subject.
When my mom mentioned this mysterious gene to Tami’s oncologist, he was shocked. Tami’s last name sounded Italian, so he hadn’t considered the possibility she could be Jewish, and therefore, to him, she wasn’t a potential BRCA-1 mutation carrier. I remember Googling Myriad Genetics early after her positive mutation diagnosis and feeling utterly confused at a corporation’s ability to patent a human gene. When it was my mom’s turn to have the test, I went back to the same page, double-checking that indeed what I had read before was still correct— our genes were indeed Myriad’s property.
Soon after my positive diagnosis, Tami passed away. The rainy May funeral is seared in my memory forever. I didn’t cry much that day; I was just angry. Angry at the disease, yes, but it was more than that.
I ask myself, when was the exact moment society told corporations that it was acceptable to place profit over people? The more I read on Myriad’s patent, the more outraged I become. How does Myriad have the right to dictate who can research BRCA, and who can test for it? How can a company make money at the expense of women’s lives?
As the Supreme Court takes on the case against Myriad Genetics’ human gene patents, I hope it too will ask these questions. I believe that outlawing gene patents is not only morally right, but is the key to open scientific collaboration. I’m standing up to Myriad Genetics’ patents on my genes for myself and for all the women in my family, and other families, who need answers about breast cancer and cannot afford barriers to progress that gene patents create.