ONE OF THE WONDERS OF THE genome is how it enables us to time-travel, both backward and forward. Scribbled within it are clues to our ancestry, which can give us an emboldening sense of continuity, coherence, place – how marvellous to imagine ours
elves the sons of Levi, the daughters of African queens! But scrawled within it, too, are clues about our future, which can be downright terrifying. Rather than expand our sense of possibilities, they foreshorten them. There are dread mutations slumbering in our cells. From our genes, we learn how we may die.
Eleven years after her mother died of breast cancer, Masha Gessen, a Moscow-based journalist, tested positive for a BRCA1 mutation, which disproportionately afflicts Ashkenazi Jews and significantly increases the risk of dying young. Of the women who carry a BRCA1 mutation, 85 per cent will eventually develop breast cancer and half, ovarian cancer.
Her son was six at the time. Her daughter, whom she was still breastfeeding, was two. Gessen suddenly had to decide whether to keep her breasts and ovaries or have them prophylactically removed. Her book 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 writes elegantly and without self-pity. It's a liberating book. Strange as it sounds, it would make a great Mother's Day present.
Baulking at her doctors' recommendations that she go for either a pre-emptive mastectomy or a removal of her ovaries, Gessen set out instead to collect information from a wider, more eccentric variety of sources. A sympathetic cancer nurse admitted that close surveillance might be a reasonable alternative to surgery. A psychologist pointed out that while breasts are central to female attractiveness, attractiveness and happiness are barely correlated. Another recommended that she weigh up the choices mathematically, assigning values to living with cancer, living without cancer and living with the stench of a cancer threat.
Though she rejects some of the latter's findings, she leaves his office feeling light, unburdened: "I jumped on my bicycle and sped home, making currents in the puddles, getting soaked, feeling strong and a little silly and generally like my life had a utility value of 100 a year, possibly even more, now that I also felt that much more competent for being able to put a number on the value of riding in the rain."
Our culture doesn't yet have the infrastructure – educational, medical, moral, the whole shebang – to handle the consequences of the recent revolution in genetic testing. But we'll need it, and Gessen, though drafted into this project against her will, is helping to do the crucial spadework to build it. As she points out, the nascent rules of the new cancer caste to which she belongs "are an approximation, albeit a very crude one, of the rules by which my daughter's generation will run its life."
And indeed, Blood Matters is about far more than Gessen's own story. She writes energetically, if a bit discursively at times, about the grander context in which her personal drama takes place. Henry Lynch, the doctor who first posited that cancer might have a genetic component (and was one of the first to talk about preventative surgery), earns a chapter, as does a group of people living with the mutation for Huntington's.
Gessen ponders behaviour and genetics (characterising herself as a "novelty-seeking, sex-crazed, egomaniacal optimist" – until she discovers she has a mutation associated with harm-avoidance and anxiety), and she writes thoughtfully about a pre-marital testing programme aimed at Orthodox Jews, which avoids telling individuals whether they carry a gene for one of the "Jewish mutations" by telling them instead if they're genetically compatible with the person they wish to marry.
The book's enduring memory is of Gessen's intelligence and wit as she's staring down the barrel of a gun. It may be an article of faith among geneticists that knowledge is power in cases like Gessen's, but she reminds us that it is also terror: although testing for the Huntington's mutation has been available for eight years in the US, she points out, only 300 people have availed themselves of it. In a way, one can understand their reluctance: there is no way to ward off Huntington's if the test comes back positive. At least patients with a BRCA1 mutation at least have some options, albeit grim ones.
The full article contains 771 words and appears in The Scotsman newspaper.
