Blog of Rights

Filmmaker Joanna Rudnick on Life with the “Breast Cancer Gene” and Human Gene Patenting

By Joanna Rudnick, Activist, Filmmaker at 1:19pm

In the Family (POV 2008) tells the first-person story of director Joanna Rudnick as she tries to decide on a course of action after testing positive for the BRCA1 mutation, the "breast cancer gene." To raise public awareness of the issues being presented in the April 15th Supreme Court hearing in our case challenging gene patents, Rudnick, POV, and Kartemquin Films will re-release the film online for free streaming. The film features Rudnick's probing interview with Myriad Genetics' founder about its patents on the genes. Today, Rudnick gives POV an update on her health and personal life, and addresses the upcoming Supreme Court case regarding human gene patenting. An excerpt of the update appears below – to read Rudnick's thoughts in full, and to watch In the Family, go to: http://to.pbs.org/ZjQjcW

The worst part about being diagnosed with breast cancer is knowing that I had the knowledge to prevent it.

I spent much of my late 20s and early 30s defined by BRCA1, the genetic mutation that gave me an up to 87 percent lifetime risk of developing breast cancer and an up to 60 percent lifetime chance of developing ovarian cancer, which I feared even more since my mother was diagnosed with the disease in her early 40s when I was pre-teen.

As a storyteller, the only way I knew how to cope with the enormity of the identity shift out of the carefree world of the healthy into the purgatory of the potentially unwell, was to make the documentary In the Family.

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Nearly five years after the release of the film on POV in October 2008, I have just finished up my last chemo, enduring 11 infusions, two blood transfusions and too many days laid up in bed listening to the sounds of my little girls giggling, at times too weak to jump up and see their little faces and squeeze them once more before bed.

Why did this happen to me when I knew how high the stakes were? I was waiting. Waiting to find the right person to launch a life with who would get what was in store for him by linking up with me. I found him and he's amazing (he has slept less than is humanly possible these last few months). We got hitched, had 2 beautiful girls as fast as we possibly could. There were no pauses. I remember calling Luis Pedraza from In the Family on my 38th birthday, proudly announcing that I was about to give birth to my second girl and get my ovaries out, just as I'd promised him in the last scene in the film.

As part of our recent move to the Bay Area, I started scheduling appointments to meet doctors who could perform my prophylactic mastectomy and hysterectomy. I had the first of these set a few weeks after we arrived. But just three days after opening the door on our new home, I felt a lump while I was breastfeeding my nearly 3-month-old. I was subsequently diagnosed with an early-stage breast cancer.

One day after my last chemo and exactly one month before a bilateral mastectomy that's been 12 years in the making, why I am writing about this rather than sleeping off the drugs as they work their way through my system? I don't want my daughters to have to go through what I'm going through. (Heck, I'm taking some of the same drugs my mom took!) I don't want them to have to rush their dreams. And I certainly don't want their only solution to be removing body parts.

I strongly believe, as I did over a decade ago when I first conceived this film, that one of the barriers to finding better answers are the patents on the BRCA1 and BRCA2 genes held by Myriad Genetics.

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