The Burden of Knowing

When I was 25, in 1997—ancient history in the world of genomics—I was invited to have one of my genes sequenced as part of a Dana-Farber Cancer Institute study. The gene in question is known as BRCA1; a mutation on that gene means a woman has, on average, a 60 to 80 percent greater chance of getting an aggressive form of breast cancer, and a 40 percent chance of developing ovarian cancer. My aunt tested positive for the BRCA1 gene mutation after she got breast cancer, but before she died of ovarian cancer. It’s a mutation she likely got from my grandmother, who died of breast cancer. It’s a mutation doctors assumed led to the ovarian cancer that killed my mother, when she was 33 and I was five.

At the time of the study I was living in Washington, DC. I met with two genetic counselors at a hospital there who were collaborating with Dana-Farber. They told me I had a variety of options if I tested positive. Because women with the BRCA1 mutation tend to get breast cancer at an early age, I could start mammograms at 30, a decade younger than most women. I could take birth control pills to lessen the risk of ovarian cancer, and schedule pelvic ultrasounds. None of this was different from what I was doing, or would be doing soon.

The counselors then mentioned another option: having my ovaries taken out and my breasts removed. Here we were, talking about science’s ability to look along a submicroscopic piece of DNA, searching for missing letters on a strip of a gene, and yet if science found that letters were missing—if the gene had the cancer-risk mutation—the best it could do was amputate or sterilize. These options seemed as though they should have been filed away in a medieval remedy book, somewhere between leeches and bloodletting.

I didn’t want what I would learn from this test to shape the many life decisions I had yet to face. I didn’t want a mutation to rush me into marrying the wrong guy, or having kids when I wasn’t ready, or having fewer kids than I might otherwise—all because I might get cancer.

The genetic counselors asked if I was concerned about passing on the BRCA1 mutation to any children I might have. I was taken aback by the question. It seemed to suggest that your genetic draw could be reason enough to never have kids. That was followed by the reassurance that I could harvest, fertilize, and freeze my eggs before having my ovaries removed, and then, if I were to have my eggs implanted, choose among zygotes free of the BRCA1 mutation. By now I was disgusted. Following that logic, certain embryos deserved to be tossed off the edge of a petri dish, lest any become a baby who might get a disease as an adult that may or may not kill her. Furthermore, it meant that people deemed genetically unfit included my brilliant, loving, gorgeous mother. And, quite possibly, me. When it came time to give my consent to analyze my blood, I decided to decline.

 

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  • Jack

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