The Huffington Post, March 29, 2013
Can you imagine having breast cancer, having lost your sister, mother and other relatives to the disease, and having doctors with no clue as to why the disease is devastating your family?
It should not be that hard to imagine. It was entirely commonplace only 25 years ago until geneticist Mary-Claire King demonstrated that an abnormal gene could be passed down from mother to daughter. Now, in Decoding Annie Parker, which will have its premiere in New York City on April 2, 2013, Hollywood is telling the story of King and a woman whose life has been spent fighting her hereditary cancers.
The movie is well-timed. Next month, the U.S. Supreme Court will hear arguments on a case that asks the question: Can genes, like BRCA1, the one identified by King and later sequenced by Myriad Genetics, be patented? It is a key question for women like Annie Parker.
Doctors have known for centuries that breast cancer runs in families. Women with relatives — especially close relatives — with the disease are more likely to get it themselves. But there were certain families riddled with breast and ovarian cancers, many of which occurred at very early ages. Many such women were Jews of Ashkenazi descent, with ancestors who hailed from Eastern Europe. 
For the most part, however, breast cancer specialists doubted that the explanation for this phenomenon could be faulty genes passed between generations. They knew about genetic diseases, like hemophilia and sickle-cell anemia, but more common diseases such as breast cancer were thought to arise from other factors, such as taking estrogen supplements, dietary habits and possible exposure to environmental toxins.
But Mary-Claire King believed otherwise. Beginning in 1974, working at the University of California at Berkeley, King began an arduous quest to prove her hunch that these high-risk families possessed abnormal genes.
Battling skepticism from fellow scientists and potential funders, King and her fellow researchers painstakingly assembled genealogies and collected blood samples from over 2,000 families. Finally, in 1990, she was successful, identifying a mutated gene on chromosome 17 in many of these families. King named it BRCA1. Although only about 10 percent of breast cancers, including those in families with a different, BRCA2, mutation, are inherited, King’s work represented an enormous breakthrough.
Meanwhile, women like Annie Parker were burying their relatives and struggling to survive themselves. Parker was born in Toronto in 1951. Her mother discovered a breast lump during the pregnancy and was diagnosed with breast cancer. She died when Parker was 14.
It was terrifying for a young girl. As Parker says to her sister, Joan, in the film, “I’m really, really scared that it’s inside of us, that it’s in our family.”
Parker was right. Thirteen years later, in 1978, Joan died of breast cancer at the age of 37.
Then, in 1980, at age 29, Parker herself developed breast cancer. She received a mastectomy and chemotherapy.
Parker’s doctors remained optimistic. In one scene in the film, a doctor tells her “Cancer is out of your life.”
By this point, however, Parker was through trusting her doctors’ reassurances. Like many other women with a strong family history of breast cancer, she began to read about the disease and possible theories of inheritance.
Parker survived her breast cancer but, in 1988, developed Stage 3 ovarian cancer. The very toxic treatment she withstood is graphically depicted in the film. But Parker was not done with cancer. In 2004, at age 53, she had a third cancer unrelated to the first two.
It is fitting, perhaps, that Annie Parker was the first woman in Canada to undergo BRCA1 testing. As she surely expected, she was positive.
Decoding Annie Parker alternates between the stories of King, played by Helen Hunt, and Parker, played by Samantha Morton. Parker now speaks about her experiences around the world. This is how the film’s writer and director, Steve Bernstein, first heard her story. Although the film will not formally be released until the fall, it is being shown between now and then to raise money for various breast cancer charities.
Today, testing for genetic mutations is routine for women with strong family histories of breast and ovarian cancer. In addition to BRCA1 and BRCA2, there are dozens of other mutations that predispose women to these and other cancers.
Some women have taken advantage of this testing to have surgeons prophylactically remove their breasts and ovaries, even if they, themselves, have never had cancer. While seemingly drastic, these women believe they can take charge of their fate in a way that women like Annie Parker could not. As one woman who recently underwent preventive mastectomy told me: “I can say that I am thrilled with my decision. I feel stronger mentally and emotionally.”
And now the Supreme Court is going to weigh in on breast cancer genetics. The question before the court is whether genes like BRCA1 can be patented by their discoverers. Those arguing against patenting believe that genes are products of nature and that companies should not profit from them. Proponents believe that without private sector funding, funding will not exist to discover additional cancer genes and allow patients to get tested.
Whatever the court decides, genetic testing for breast cancer is here to stay. Although it is not appropriate for every woman with breast cancer or at risk for the disease, women like Annie Parker must no longer remain in the dark about their fates.
1. Barron H. Lerner, The Breast Cancer Wars, Oxford University Press, 2003, pp. 276-290.