Patently Unjust: No Company Should Own the Breast Cancer Gene.

• Author: Lydersen, Kari

Joanna Rudnick wanted to be a health, reporter. When she began a masters program in science journalism at New York University in 2000, her goal was to explore how medical advances affect patients and policy.

Little did Rudnick know how personal this mission would soon become.

Shortly after returning from a trip to India in 2001, she got a call from her older sister, Lisa, asking nonchalantly, "Have you heard about the test?" Lisa is a mammographer who spends her days diagnosing breast cancer. Their mother, Cookie, was diagnosed with ovarian cancer at age forty-three, and survived the often-deadly disease. There is an extensive history of ovarian cancer on Cookie's father's side of the family and of breast cancer on Cookie's mother's side.

The test Lisa was referring to is for a mutation on the genes known as BRCA1 and BRCA2 (named simply for BReast CAncer). Women with harmful mutations on these genes are five times more likely to develop breast cancer than a woman who does not have such a mutation and ten to thirty times more likely to develop ovarian cancer. The Rudnicks are Ashkenazi Jews (of European descent)--a group at particularly high risk for the mutation and hence the cancers. Doctors told Joanna that she might have as high as an 80 or 90 percent risk of breast cancer. Rudnick's mother found a genetic counselor in New York to do the test for Joanna, and flew out to be with her when she got the results. At dinner the night before, a waiter remarked on how similar Joanna and her mother looked, and Joanna got the sinking feeling that she did indeed have the gene mutation. The next day, her fears were confirmed. She collapsed crying in the arms of her mother, who was wracked with guilt at having passed on the mutation.

[ILLUSTRATION OMITTED]

That afternoon, Joanna went back to work and tried to act as if nothing had happened. But she had to start considering her options. Many women with the gene mutation opt to have their breasts and/or ovaries removed preemptively to greatly reduce their cancer risk. She wanted to have kids but was not in a serious relationship at the time and hadn't felt any big rush. Suddenly it seemed the clock was ticking.

After finishing her master's, Rudnick moved to Chicago and began working for the acclaimed independent documentary film production company Kartemquin Films. Kartemquin's mission is to "examine and critique society through the stories of real people," taking on topics including disability, PTSD...