Knowing You Carry a Cancer Gene

Emma Pearson in The New York Times:

CancerI jogged into the Stanford Cancer Clinic with my boyfriend, the youngest people there by two decades. We stood there sweating and holding hands, a jarring sight in the sickly light. “You are 18, right?” the receptionist asked. Behind me, a woman so gaunt that her cheekbones protruded rolled by in a wheelchair. The oncologist called me alone to the exam room, and I told her the story I had revealed to more doctors than friends: I carry the BRCA1 mutation, which gives you a 98 percent chance of developing cancer. When my family found out that I might have inherited the mutation from my mother, we took it as a given that I would get tested. Scientists, atheists and lawyers, we are compulsively rational. Yet when I learned I carried the mutation, I felt the cruel weight of a paradox: you can never know whether you want to know until you already do.

At Stanford, I study artificial intelligence, in which math is used to resolve these sorts of dilemmas. My teachers claim that gaining information never hurts. It can be proved mathematically that a robot with more information never makes worse decisions But we are not robots. Our eyes don’t filigree the world with coordinates and probabilities, and they can be blinded by tears. Still, we, too, display a preference for information. We dislike uncertainty so strongly that we sometimes even prefer bad news. One study of people at risk for a terminal disease found that those who learned they were going to die from it were happier a year later than those who remained uncertain about their fates. Most people have a deep intuition that a life lived cleareyed has inherent value, independent of whether the truth makes you happy. But surely this has limits. I know there are some things I do not want to know: which other girls my boyfriend finds attractive or the day and manner of my death. The truth can hurt in two ways. It can worsen your options: you can’t live as happily with a significant other after learning of his infidelity. Or it can make you irrational: hearing about terrorists targeting airplanes may lead you to drive instead of fly, though planes remain much safer than cars.

So was I wrong to unwind my double helix?

More here.