On October 7, 2008, POV will air Joanna Rudnick‘s In the Family. When Joanna tested positive for the “breast cancer gene” at age 27, she knew the information could save her life. She also knew that she would have to make heart-wrenching decisions about whether or not to remove her breasts and ovaries, or risk developing cancer. In the Family is a moving document of one young woman’s struggles, and her efforts to reach out to other women while facing her deepest fears.
On May 1st, Congress passed the Genetic Information Nondiscrimination Act (GINA) bill. On this momentous occasion, Joanna writes in to talk about why the GINA bill is so important, and to introduce us to In the Familiy.
In 2001, at the age of 27, I decided to take a genetic test to find out my odds of getting breast and ovarian cancer. As I pondered what a positive test result would mean to my future, one of my main concerns was the potential for losing my health insurance because of a pre-existing condition.
Even though a positive test result is only a predictor of risk and not a diagnosis of disease, I wasn’t confident that the insurance companies would see it the same way. So I tested anonymously, paying out of pocket for the blood
It came back “positive for a deleterious mutation,” and I worked hard to keep the information out of my medical records, often leading to confused and uninformed conversations with doctors about my future care. I began to think that maybe, just maybe, I shouldn’t be living in fear solely because I inherited some bad DNA.
During the process of making In the Family, I hooked up with an incredible group called The Coalition for Genetic Fairness that was working tirelessly to try and pass legislation to protect individuals from genetic discrimination by insurers and employers. This legislation, The Genetic Information Nondiscrimination Act (GINA), would offer more than just legal protections; it would conquer the culture of fear that had grown around genetic testing.
After a nearly 13-year battle to pass GINA in some form of another, the bill passed both houses of Congress a few weeks ago and President Bush has promised to sign it into law.
I cried as I watched two hours of the Senate hearings on C-SPAN, during which Senator Ted Kennedy referred to the bill as the most important civil rights legislation passed in the new century. I could see the hundreds of faces of all the women and their families I encountered on the road the last few years and know that they no longer had to live in fear that their genetic information would be used against them.
Instead, we can now focus our energies on early detection and prevention, and living full lives despite our predispositions.
In the Family airs on POV on Wednesday, October 1. You can sign up to be reminded of the film’s broadcast on its preview page.