Siddhartha Mukherjee in Tonic:
A few days ago, I had just stepped off a podium at a cancer conference when a 50-year-old woman with a family history of breast cancer approached me. I had been discussing how my laboratory, among hundreds of other labs, was trying to understand how mutations in genes unleash the malignant behavior of cancer cells. She told me that she carried a mutation in the BRCA-1 gene—a mutation that she had likely inherited from her father. Diagnosed with cancer in one of her breasts when she was 30, she had undergone surgery, chemo, radiation and hormonal therapy. But that grim sequence of diagnosis and treatment, she told me, was hardly the main source of her torment. Now, she worried about the development of cancer in her remaining breast, or in her ovaries. She was considering a double mastectomy and the surgical removal of her ovaries. A woman carrying a BRCA-1 mutation has nearly a 60-70 percent chance of developing cancer in her breasts or ovaries during her lifetime, and yet it's difficult to predict when or where that cancer might occur. For such women, the future is often fundamentally changed by that knowledge, and yet it remains just as fundamentally uncertain; their lives and energies might be spent anticipating cancer and imagining survivorship—from an illness that they have not yet developed. A disturbing new word, with a distinctly Orwellian ring, has been coined to describe these women: previvors—pre-survivors.
The uncertainty and anxiety had cast such a pall over this woman's adult life that she did not want her grandchildren to suffer through this ordeal (her children had not been tested yet, but would likely be tested in the future). What if she wanted to eliminate that genetic heritage from her family? Could she ensure that her children, or her grandchildren, would never have to live with the fear of future breast cancer, or other cancers associated with the BRCA-1 gene? Rather than waiting to excise organs, could her children, or their children, choose to excise the cancer-linked gene?