How a UW doctor cracked the breast cancer gene

SEATTLE -- "I think I always had this cancer in me, even when I was in my mom's womb."

Annie Parker does not remember a time in her life when cancer was not present. Her mother was first diagnosed with breast cancer when she was pregnant with Parker in 1951 in Toronto. Fourteen years later, she died of ovarian cancer. In all, Parker would lose her mother, cousin and sister to cancer before she was diagnosed herself at age 29.

Back then, most oncologists did not believe there was a genetic link to cancer, but Parker wasn't convinced.

"It just seemed like there had to be more to this than bad luck," Parker said. "There had to be something in our family tree that was causing all my loved ones to die from this very mysterious disease."

Parker's story is the basis of the film "Decoding Annie Parker," premiering this week as part of the Seattle International Film Festival. The film parallels Parker's experience with the story of University of Washington breast cancer researcher Mary-Claire King, who discovered the genetic links to certain types of breast cancer in families.

King began her research in 1974 at the University of California, Berkeley, when she was just 28 years old.

"It had been clear for many decades that breast cancer clusters in some families," King said. "These were families in which women were fit and healthy and doing everything right. These bold, out-of-the-blue series of tragedies, it was way too much to be by chance."

Over 17 years, King searched for a genetic link to the disease, constantly thinking about the women who could be saved by her research.

In 1990, King demonstrated that a single gene, BRCA1, was responsible for many breast and ovarian cancers. As a result, women with a family history of breast cancer can now be screened for the gene and offered various preventative measures to reduce their chance of developing cancer.

"I wanted to work on something that might be of use to women, but it never crossed my mind that it would have the impact that it did," King said.

Still, King's compassion keeps her from feeling satisfied.

"Every time I learn that a woman with an inherited mutation has died of breast or ovarian cancer I feel like I've failed," she said. "There should have been testing available inexpensively and efficiently for such women so they shouldn't have to go through this."

"Decoding Annie Parker" is being shown at a time when the future of genetic testing is uncertain. The Supreme Court is currently considering whether it is legal to patent genes (Association of Molecular Pathologists v. Myriad Genetics), as Myraid Genetics did with the BRCA1 and BRCA2 genes in the mid-90s.

The Patent Act of 1952 allows "human-made inventions" to become private property but exckudes "products of nature." But, during the 90s the U.S. Patent Office allowed many companies to patent segments of DNA after scientists extracted them from human chromosomes, qualifying them as a man-made invention.

Today, Myraid is currently the only commercial tester of the BRCA1 and BRCA2 genes, charging patients and insurance companies $4,000 while similar genetic screenings are performed for far less.

Parker fears women in the United States who could benefit from the test cannot always get it.

"Why should it be just one company that can have that kind of pull on who can be tested?" she said.

King's lab is currently developing accurate and affordable testing for BRCA1, BRCA2 and other genes that can cause breast or ovarian cancer. Proceeds from this week's film screenings will help fund that work.

"We have developed a way of identifying genetic mutations in all the critical genes, including BRCA1 and BRCA2 and we didn't patent it," King said. "We want the technology out there. It would be just fine with me if 1,000 hospitals used it."

While King and Parker's experiences are woven together on screen, the two have never actually met. After exchanging emails and learning about one another, they will finally come face to face at the Seattle premiere of "Decoding Annie Parker" on June 6.

"Dr. King is my hero," Parker said. "I don't know what I'm going to say, but I think a big thank you is appropriate."

The admiration is mutual.

"[Anne] is an iconic figure," King said. "A tragedy happened to her that was absolutely not of her making, but then she learned enough about it to know that this s nothing that she caused in any way."