In the Family
Last night I watched Joanna Rudnick's intimate and informative documentary, "In the Family," about the BRCA genetic mutations that cause a predisposition to breast and ovarian cancer. Using her own story as the framework for the film - she learned that she is a BRCA mutation carrier at age 27 - Rudnick speaks with cancer survivors, doctors, genetic counselors, other "previvors" like herself, and family members about what it's like to know that your body is, as she puts it, a "time bomb."
On the one hand, Rudnick says, it is amazing to have access to this knowledge about our bodies, unthinkable a generation ago, but the choices it presents are grim: watch and wait, knowing that the risk of breast cancer could be almost 90% and ovarian cancer 60%, or have prophylactic surgery - that is, cut off the body parts that could be affected before cancer has a chance to develop.
The film is, in large part, Joanna's personal exploration to decide what she should do - have surgery now, or wait until she's married and has children. One story line in the film involves her deepening relationship with her boyfriend and the challenges her BRCA status (and the film project) pose. But it also exposes the underlying race and class issues at play in the growing field of genetic testing. Ashkenazi Jews like Joanna Rudnick - who are 5 times more likely to carry a BRCA mutation than the rest of the population - are frequently encouraged to do genetic testing, but African-Americans are not. One company in the US has a monopoly on testing; Myriad charges $3000 for the test (indefensibly, as Rudnick reveals in one of the film's sharpest interviews), and may not be covered by your insurance, if you're lucky enough to have any.
The film got me thinking about silences and hidden stories - the stories hidden in our bodies and our genes, the stories hidden in our family trees - which genetic testing may suddenly make audible. I've thought a lot about the historic silences around breast cancer, but Rudnick's film calls attention to the new stigma, silences, and reasons for hiding created in this age of genetic knowledge. How do people with a BRCA mutation share this information - with friends, prospective partners, children? Whom to tell, and when?
"I had no intention of 'starring' in my own movie," Rudnick says. "Actually, I was as reluctant as anyone to 'come out' on camera because I was afraid it would make falling in love and having a relationship too difficult. But I realized this story had to be told not only factually and objectively, but in the most personal way, and that I could do that best by using my own story." She recounts that when she first got her genetic test results, she couldn't even bear to tell her closest friends. By the end of the film, she is testifying on behalf of the Genetic Information Non-Discrimination Act, which prohibits the use of genetic information in health insurance and employment and became law in May 2008.
My own story brings me here, as well. I watched this film because I recently found out that I, too, carry a BRCA mutation. Unlike Joanna, I immediately felt sure that surgery is the best option for me. I'm a mother, and my priority is to live so that I can keep being one for a long time. I will undergo a prophylactic bilateral mastectomy this winter, and plan to remove my ovaries within the next few years. It's hard information to share - and, in the way of the blogosphere, both strange and liberating to write about it here - but I hope my story may help others face their own fears and questions around this issue. There are so many of us out there. Learning how to raise our voices can only be a good thing.