Blood Matters
In NYT this weekend, Jennifer Senior reviewed Masha Gessen's Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene this weekend:
... While it was Gessen’s misfortune to have inherited her mother’s cruel mutation [BRCA1], it was her good luck — and ours — that she also inherited her mother’s storytelling grace and critical dexterity (Yolka Gessen was a writer and a translator). “Blood Matters” is valuable reading to almost anyone facing a huge health decision, not only for the literary commiseration it offers, but also for the inspired example of medical sleuthing on one’s own behalf that it provides. Gessen keeps an inflammatory topic at room temperature, writing elegantly and without self-pity. The book is very funny in places. (My favorite sentence, for reasons I can’t quite describe: “DNA-testing equipment tends to fall into two categories: things that look like printers and things that look like toasters.”) It’s also very lucid, even when the science gets complex. It’s a liberating book. Strange as it sounds, it would make a great Mother’s Day present.
Given the relative odds, one would think Gessen’s genetic counselors would have advised a pre-emptive mastectomy rather than an oophorectomy, or removal of the ovaries. To her surprise, they recommended an oophorectomy. One can understand their logic: breast cancer is easier to detect and survive; removing the ovaries reduces the risk of breast cancer; and most women can’t even countenance the idea of parting with their breasts. But Gessen balked, well aware of the studies associating surgical menopause with cognitive troubles and depression, to say nothing of osteoporosis, high blood pressure and heart disease. “I politely suggested I could just shoot myself tomorrow: That would prevent my death from cancer with a 100 percent probability,” she writes. “The joke remained suspended in the thin air between us and the counselors, and with it, our disengagement from one another was complete.”
And that question I had last week about what you call the state of potential disease? According to Gessen's book, the word used in the community of women with BRCA1 is "previvor." Gessen herself calls it being in the "cancer caste."
-Greg Dahlmann
UPDATE: Be sure to check out Larry McCullough's comment about terms such as "previvor."
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The use of "previvor" and other locutions such as "pre-disease" is completely unnecessary, because such locutions suggest that the issues here are new and unprecedented. Not so.
The correct locution and concept is "risk assessment," which physicians have been doing for decades. Common, long-standing examples include behavior-based risk assessment, e.g., lack of exercise and increased risk of heart disease. Genomic medicine simply adds to the sophistication and incementally increasing precision of risk assessment.
The task for patients, living with increased risk and undertaking measures to manage risk, requires only the ordinary courage that it takes to live on this risky planet, except that one has some details about risk (i.e., in which sub-population of patients one should be classified and clinically managed).
There is nothing new or unprecedented here. Indeed, this is all a tempest in a teapot.
- by Larry McCullough on May 12, 2008 at 9:35 AM | link