I have long been intrigued by the question of to what degree our personalities and our health are affected by our genes versus our environment. Through reading and film I’ve learned more and more about how pollutants in our environment put as at risk for health problems, and simultaneously I have marveled at scientists’ capacity to unlock the human genome. Among other advances brought about through these new scientific understandings, we now have the tools to help us learn whether a certain gene might increase our risk of cancer or other diseases.
Because of my fascination with the role of our genes in shaping our lives and because of my own family history of cancer I was delighted when I found out that Working Films would be planning a summit meeting for the film In the Family. In this documentary, filmmaker Joanna Rudnick, age 31, faces an impossible decision: remove her breasts and ovaries or risk incredible odds of developing cancer. Armed with a genetic test result that leaves her vulnerable and confused, she balances dreams of having her own children with the unnerving reality that she is risking her life by holding on to her fertility. In the Family follows Joanna as she connects with other women trying to navigate the unpredictable world of predictive genetic testing.
I’ve worked closely with Joanna and the film’s co-producer Beth Iams in preparing for the summit meeting for the film. At this meeting we will bring together the leading organizations working to prevent breast cancer and raise awareness of the issues surrounding genetic testing for cancers and other diseases. A few weeks ago I picked up our office phone and on the other end heard Beth’s voice, full of excitement: “Anna, take a look at C-Span right now, the Senate is just about to pass GINA.” I hurried over to the television and sure enough the Senators were voting on the Genetic Information Non-discrimination Act.
Beth’s excitement was certainly warranted. One of the reasons that some folks choose not to take potentially life saving genetic tests, like the one taken by Joanna in the film, is that they are worried about the use of the information after the fact. They worry they will never get health insurance or will lose out on job opportunities if they have certain genetic mutations. GINA, which was signed into law On May 21st by President Bush, is landmark legislation designed to avoid those types of abuses. It will provide protections against discrimination based on an individual’s genetic information in health insurance coverage and employment settings.
One of the lead partners in a coalition working for the passage of GINA is our host for the summit meeting, the Genetic Alliance. We look forward to their participation in our strategy meeting and to finding out how In the Family can help raise awareness of the new rights afforded to people under GINA.