Decoding movie about decoding DNA

The movie about BRCA1, a mutation in a gene, is about the emotion of dread.

Annie Parker, the main character,  sees a recurring symbolic doorway, over and over, that is a visual Greek chorus reminding her of her mother’s death from cancer. Parker stands in for all of us. While the monster she fears early on is breast cancer, one can easily see the movie from a more universal view. We all dread. We all feel destined.

I saw the movie June 6th, at a special premiere showing in Seattle, the city where Mary-Claire King does her daily work uncovering more and more about genomics and how our destinies sometimes get written in our DNA. The movie is fiction, but King is portrayed in it as a determined scientist. As many already know, King spent about 16 years building the case that there was a heritable cause for breast cancer. She’s spent dozens more refining that understanding. The acronym BRCA1 is the label for the mutation that she first identified as increasing risk of both breast and ovarian cancer. Annie Parker lived most of her life not knowing about this mutation – and feeling frustrated by not knowing.

Most people leaving the theater probably tell friends the movie was about breast cancer. But I think the movie was about dread itself and about scientific curiosity.  It was about the black taste of ash in your mouth at the bedside of a friend who is dying. The movie was about nausea.  But it was also about one of the antidotes to dread – understanding.

We get to know Parker through her everyday life, making lunch for her son and married to a man who doesn’t share her curiosity about the disease that took her mother and her sister. But in part, the psychological thrill of the film comes from seeing Parker set one small idea on top of another, as if using blocks, to try to find a way to explain her disease. This tentative and frail understanding slowly helps her to face the episodes of illness.

“Annie Parker is, I think, iconic of many women that I’ve met in the course of doing this work — women who were stunned by what happened, devastated by what happened, and responded not by giving up but by learning, by becoming involved, by figuring out what had happened,” King told a reporter in a story from The Seattle Times newspaper.

Over and over, Parker fights back against dread by trying to understand. Without any medical education, she still demonstrates the scientific principles of exploration and hypothesis. She creates a strange study club with a nurse and a sympathetic doctor. The trio hold meetings where they communally try to decipher published work on breast cancer and become lifelong friends in the bargain. Parker mythologizes King when she finds out about King’s work – and writes dozens of letters asking to join the research.

The movie’s director, Steven Bernstein, managed to mine some of cancer’s vilest images for humor. Parker pukes in her son’s backpack, because he won’t open the bathroom door fast enough for her to reach the toilet. “I’ll buy you a new backpack,” she says bravely, in a lilting voice that many mother’s use to try to disguise bad news from children. He stands dumbstruck by the sight of his mom with puke drooling from her mouth. The actress Samantha Morton does a great job portraying Parker.

What emerges from this complex character study of a woman is that for her – the notion that cancer might be inherited is a liberating idea. She wants to understand the how of her own family’s suffering, and knowing the science breaks a cycle of dread.

We grow to love the fictional Parker because of her faults and foibles. We love her quirky humor and her intense loyalty to certain people – even if they don’t prove all that stable. We love the way she gets hold of an idea and won’t let go. Even if her near-obsession costs her dearly. Many times in the movie, we see the healing power of understanding. People wrestle with questions and seem to heal from answers.

As the packed audience in Seattle clapped, we knew that the real-life Anne Parker of Toronto would stand before us.

She flew in to meet Mary-Claire King,  and they embraced for a long moment.  Flashbulbs threw light on it, video cameras whirred,  and the audience wondered suddenly whether we were seeing the character from our movie step out of the frame and get emotional closure.

Three people stood on stage after the show – director Steven Bernstein, scientist Mary-Claire King and stubborn patient Anne Parker. In different ways, they all faced dread. They all faced impossible odds.  One wonders if these three share a mutation somewhere, a reason they won’t quit.

Resources:

For more information aimed at helping patients understand genetic risks in breast and ovarian cancer, the patient group FORCE provides much discussion. There is a Seattle chapter of FORCE and members attended the screening and met after the movie. At that meeting, several women shared that they know they carry the BRCA1 or BRCA2 mutation, and are glad to have a place to talk to other people facing such information.

Bioethicists regularly struggle with how information about risk influences a person’s quality of life. For more discussion of “dread” in that context, and other bioethics issues, see this compendium from Nature.

In the photo above, Anne Parker is at left, Mary-Claire King is center and Steven Bernstein is at right.

 

 

 

 

 

 

 

Celebrity fuels movie and device awareness

When a famous actress writes about her own mastectomy, the world listens.

Angelina Jolie wrote a story for the New York Times opinion pages about her own genetic risk of breast cancer, based on a mutation in her copy of the gene BRCA1. On June 6, Seattle audiences will get to see a new movie, Decoding Annie Parker, about the Seattle scientist, Mary-Claire King, who spent almost sixteen years discovering that genetic link. Adding to that, a Seattle biotechnology company is sponsoring the screenings of the movie.

Steve Bernstein, the movie’s director, calls the Jolie revelation and firestorm of social media awareness a “tragic serendipity” for his film. He spoke to radio reporter Stan Alcorn, on the show, Marketplace, on May 16. Jolie wrote about choosing to have a mastectomy – as a way to reduce her risk of getting cancer.

In another development tied to Seattle, the biotech company Atossa Genetics is in the middle of the debut of a marketing campaign for their device – called the Forecyte, which will be used to try to diagnose breast cancer earlier than by traditional methods.  They’ve announced they are sponsoring the two screenings of the movie, but would not say the size of their donation to Seattle International Film Festival (SIFF.)

The ForeCYTE device helps pump cells from a patient’s breast milk ducts into a testing container. The fluid is examined in a laboratory for the presence of maligant cells or cells that show pre-malignant signs. Based on that information, Atossa claims to be able to predict the patient’s likelihood of developing cancer. More details are available on their website.

During a phone interview, Chris Destro of Atossa said he did not want to reveal the dollar amount of the sponsorship that the company provided to SIFF. According to the movie’s own information, they are donating a portion of the ticket price for the screenings to King’s UW laboratory.

Atossa is publicly traded on the NASDAQ as ATOS. Company representatives are attending one of the largest cancer conferences of the year in Chicago from May 31-June4.

“We believe that our ForeCYTE Breast Health Test represents a breakthrough in breast cancer risk assessment testing. The ForeCYTE test can provide vital early detection of cancer or precancerous conditions and therefore help prevent breast cancer and save lives. We look forward to presenting the ForeCYTE test’s value at ASCO, the largest gathering of oncologists in the nation,” Destro said, in a news release. He is vice president of Atossa.

There isn’t an obvious link between the movie celebrating the pioneering genetic science of breast cancer and the new device+lab work that Atossa is marketing. Destro explained it this way: “We wanted to honor Dr. King and her contribution.”

There are two genes where mutations are known to change a woman’s risk of breast cancer, and they are called BRCA1 and BRCA2. Scientists believe there may be other genes yet to be discovered that might increase a woman’s risk. Of women diagnosed with breast or ovarian cancer, it is estimated that about 10 percent carry known genetic markers giving them an inherited risk.  Genetic testing pioneered by King allows a minority of women to make life decisions to lower their own risk.

King is the American Cancer Society Professor at the University of Washington in Seattle and, since 1998, a member of the Fred Hutchinson Cancer Research Center. She’s received 13 honorary doctorates including honorary doctorates from Harvard, Yale, Columbia and Princeton. She is a member of the National Academy of Sciences of the USA, the American Academy of Arts and Sciences, and the French Academy of Sciences.

In blog posts to come, I will examine the Jolie awareness spike and what difference it might make for physicians and genetic counselors.

Here are a few resources for more details about the topic:

Memorial-Sloan Kettering Cancer Research Center

Facing our Risk – patient advocacy non-profit