Last Thursday’s Supreme Court decision about the limits of obtaining patents on human genes was somewhat personal for me. Like Angelina Jolie, I, too, had that BRCA gene test. Unlike Jolie, my test results were good. I feel very fortunate to have been able to afford the test. If it’s made widely available, it would be beneficial for thousands, if not millions of women. To use a poker analogy, with the BRCA information, women will have more knowledge of how their cancer deck is stacked.
For me, it started with a genetic counselor giving me a questionnaire during my annual breast exam: Did my mother have breast cancer? Answer, yes. My maternal grandmother? Yes, again. Did I ever have cancer? Yes, colon. It was decision time: Did I want to know if I had the BRCA gene or not?
Some women with a familial history of breast cancer might not want to know. These folks --perhaps those with a lot of other stuff going on in their lives -- have the if-it-happens-I’ll-worry-about-it-then attitude.
Me, I wanted to know. I had been in a similar situation before.
Years ago my (extremely smart) internist urged me to have a colonoscopy. No way, I thought, I’m too young, the prep is gross and painful, etc. I underwent the test, and the doc found and removed a bad polyp; I became a believer in the idea that knowing (even if it’s not good news) is better than not knowing.
But my taking the BRCA test did revive some difficult memories.
While I’m sure Jolie had a first-class breast surgeon and all that, my mother’s mastectomy procedure (including before and after the surgery) was … nasty, which is the only word I can think of. Nasty as in overhearing one of the medical staff ask: “So which one’s coming off?” Lest you think this event occurred in some backwater little hospital, it actually happened in a major Washington D.C. area facility.
With that in mind, I could have said to myself that perhaps the BRCA cancer gene skipped my generation. Maybe I got my maternal aunt’s genes -- she never had breast cancer. Maybe I could just wait a while, as my mother and grandmother got breast cancer in their 70s. And so on.
In fact I did say these things to myself, then remembered what happened with that colonoscopy I was supposedly too young to have.
I realize the SOCTUS decision was based on a fine point of law -- if someone could “own” a natural human gene -- and was not based on public policy or social concerns. That’s OK. The beneficial side effect of the decision is that many more women (and their families) will have access to important health information.
As an economist, I know that having good information leads to better decision-making. A woman being informed of her risk of a certain type of breast cancer helps give her more control over her future. And that’s a very good thing.
Joanne Butler is a graduate of the Kennedy School of Government at Harvard University and a former professional Republican staff member at the U.S. House of Representatives Ways and Means Committee.