This is 2005. There has to be a better way. The only thing you can do is remove body parts?
Joanna Rudnick has a genetic mutation. Inherited from her mother, the gene means she has something like an 85-90% lifetime chance of developing breast cancer, as well as a somewhat lower (in the 60th percentile) chance of developing ovarian cancer. Just 32-years-old, Joanna knows this because she has been tested. And now she has some decisions to make.
In the Family
Joanna Rudnick, Martha Haley, Linda Pedraza, Olga Flores
Regular airtime: Wednesday, 9pm ET
US: 1 Oct 2008
Rudnick charts the complicated process of making these decisions in her documentary, In the Family, airing as part of POV on 1 October. Alternately informative, distressing, and galvanizing, the film begins just as Joanna has met a new boyfriend online. Jimmy’s sweet and funny, and savvy enough to google her after their first date, at which point he learns about her film project. She recalls their exchange, as he asked why she didn’t tell him about it. She reports, “I said, ‘Well, I wasn’t going to tell you I have a genetic mutation and I’m making a film about it on our first date.’” And yet, there it is.
At first, Jimmy seems okay with it, especially as Joanna has opted, for the moment, for “surveillance” rather than surgery. He doesn’t quite get her concerns (suggesting her knowledge has prompted “a degree of paranoia”), as Joanna weighs possibilities: should she have a mastectomy early, to cut the chances of cancer? Should she wait? Should she keep her ovaries until she has children, and then have them removed? Should she hope for the best? While Joanna is able to discuss these questions with her mother Cookie and sister Lisa (a mother of twins and a mammographer who does not carry the mutation), she’s less comfortable talking to Jimmy. When they visit a doctor to hear, essentially, odds, he’s stunned. Now he has questions: maybe Joanna likes him because she’s eager to have kids. Maybe she’ll have to have her body altered in the near or far future. “You can’t help but catastrophize when you hear something like that,” he says, as she sits across a table from him and watches his face contort. “And it feels awful to think about, what does that mean for me? It feels so selfish.”
As In the Family reveals in short order, the gene is not the only wrench in this evolving relationship. So too is the film itself. She takes her film crew on a trip to visit with other women who have had to deal with the same information she now shares with them, members of a group called FORCE (Facing Our Risk of Cancer Empowered). They gather in a room in Philadelphia: they all have cancer in their families, and most everyone has had surgery, either before or after getting cancer (the group is referring to the film as the BRACumentary on its website, after the mutated gene, BRAC). Touched by Linda Pedraza’s story, Joanna goes to see her in Boston, where she meets her husband Luis and their two children, including 16-year-old Nicole—who will have to decide herself someday whether to be tested for the gene and then, if she does, what to do about it. Luis articulates what Linda and Joanna know all too well: “Once you know that you might have the gene, I don’t see how you can go through life without thinking about it.”
This is the crux of it. Dr. Mary-Claire King, Professor of Medical Genetics at the University of Washington, puts it this way: “Living with a cancer predisposition is like being a cancer survivor, it’s always in the back of one’s mind.” Whether speaking with friends, family or organizations, Joanna is outspoken concerning her frustrations and questions. Her investigation leads her to meet people she didn’t imagine meeting, like survivors of cancer and mastectomies who are posing for a FORCE calendar (masks on their faces, their chests, reconstructed and not, exposed). She spends time with three sisters who get tested and learn their results together (the one who does not have the mutation bursts into tears, feeling “guilty” as well as relieved and guilty for feeling relieved).
Joanna’s observations of Martha Haley point out the effects of testing within a black community; according to the film, black women are five times less likely to be referred for genetic testing, a function of culture and, of course, economics. A cancer survivor, Martha promotes testing (as does her pastor, in a scene that underlines Joanna’s status as “outsider”), but understands it’s a hard sell (“We do compare a lot of testing like this to the Tuskegee,” she says). Her sister Marilyn won’t be tested. “Do I worry about it?” she says, “No. If it’s unknown to me, let it stay unknown.”
Joanna has a different sort of encounter with Jeff and Rich, whom she interviews in a bar. They offer their “guy” perspectives on having the mutation, knowing that while their own risk of developing cancer is elevated, the real concern is the prospect that they might pass it on to children. Observing that for men, breasts are “toys,” they advise her to wait until after she’s married to have the surgery: “Then you don’t have to worry about finding a man with tattooed nipples.” The camera looks over at Joanna, her face frozen in an unconvincing smile.
On top of underscoring the social conventions that make knowing about the mutation so complicated, Rudnick’s film makes two crucial points, almost in passing. For one, the availability of such knowledge can lead to discrimination in getting hired and insured (during the film’s making, the Genetic Information Nondiscrimination Act was passed in May 2008). For the second, the patents for the mutated genes—and thus the commercial interests in processing tests—are owned by Myriad Genetics, Inc. Joanna puts on her sweetest demeanor as she reports that this “money being made on something that exists in nature” might suggest a less than generous attitude on the part of Myriad’s founder Mark Skolnick. He blames it on the market, even as trucks full of Federal Expressed tests arrive to be processed, at $3,000 a pop. No doctors would do the work, he says, if there were profits to be made. Maybe so, but it’s a disappointing observation nonetheless.