The Burden of Knowing

For the right fee, a Cambridge firm called Knome will unravel all the secrets hiding in your genes. But what happens when those secrets include a higher risk of getting cancer? Or of contracting a crippling disease like Alzheimer’s? Would you be able to handle that information and the terrible choices it forces?
I wasn’t.

My husband and I decided to have the baby. I went through four cycles of chemotherapy while pregnant, and Eliana was born healthy and with a full head of hair in October 2007. She smiles approximately 90 percent of the time. It has been over a year since I was diagnosed; the chances are quite low that the cancer will at some point reappear in terminal form elsewhere in my body. But with breast cancer, that chance is never zero.

In one of my last conversations with George Church, I shared my story. When I told him I had originally resisted testing, he told me that he understood that this information could change people’s lives in “subtle and unpredictable ways” and that it’s not an easy decision to make. When I told him I had later tested positive and decided not to have surgeries, or rush to have kids, he said some people are prepared to take more risks in life than others, adding, “There could be a genetic component to that, too.” When I told him I had developed cancer, he said he was “very, very sorry.”

People make decisions, Church said, and live with the consequences. But those consequences become our lives, and we end up becoming the decisions we make. We can never know what we would be like had we chosen differently. We can only imagine. Sometimes even that is difficult to do.

My relative is convinced that if she hadn’t had her surgeries, she definitely would have gotten cancer. I tell myself that if I had tested earlier in life, I might not have had my older daughter, Micaela. And that if I had found the lump earlier, I would not have had Eliana. George Church tells himself his story, in which his technology is used only for good, where there is always something to be gained, and never lost, from more information about our genes, and where if science can do something, it should. We all believe whatever it is that convinces us we’ve done the right thing. It’s simply in our nature.


  • Jack

    Get in touch with me. I have thought of you often over these years, wondering if you still want bagels.