"Blood matters" and reflections on the new age of personal genomics

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Sandra Porter
Masha Gessen was faced with a terrifying choice: cut off her breasts, and possibly save herself from cancer, or use them to feed her child. It was late at night when I walked back to my empty dorm room at the conference. Shivering, I stood on the narrow bed, quickly shut the windows, tore the blankets off the other bed, and wrapped myself up, trying to get warm. Too cold to sleep, I picked up my copy of Masha Gessen's "Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene," expecting boredom to lull me into unconsiousness. An hour later, I was still reading, riveted by Gessen's struggle and fascinated by the stories she described. The topic is science, but this book reads like a novel. You don't need a Ph.D. in genetics to be captivated by the story, and you won't fall asleep. Gessen tackles many different topics while describing her quest for information: the four mothers of the Ashkenazi Jews, genetic testing for ancestry and race, the horrors of Nazi Germany, eugenics, Huntington's disease, risk calculations. She tackles topics that many might prefer to keep quiet, such as the relationship between genes and intelligence and whether some forms of those genes might be more prevalent in Ashkenazi Jews. She delves into genes that are linked to behaviors, such as the monoamine oxidase A gene (linked to aggression) and the dopamine D4 gene (linked to addiction), her own test results and her worries for her child. There is a great temptation in humans to link the things that happen to some kind of cause. We forgot to perform a ritual and there's an earthquake. Of course, those events must be related! Knowing our genomic information could have the same result. Gessen speculates about her former addiction to smoking, and whether her child has inherited those genes. Right or wrong, it's pretty tempting to blame our genes for any traits we don't like. Her book was written before the direct-to-consumer testing companies like 23andme became news, but one can't help but wonder if customers might scan that information when they're deciding who to date. But genetic matchmaking isn't entirely new. As Gessen describes, Dor Yeshorim is an institutionalized form of eugenics or maybe a more precise term is "un-matchmaking" practiced by New York Jews. Dor Yeshorim began with the goal of helping parents avoid the tradegy of genetic diseases like Tay Sachs. Through this program, school children are tested for Tay Sachs. They never learn the results directly. When the children are old enough to date, they can call Dor Yeshorim and find out whether a person is a good genetic match or incompatible. Does Dor Yeshorim work? According to Gessen, there were 50 to 60 children born each year with Tay Sachs, in the Orthodox community, in the 1980's. In the 2000's, there were only four to six. Is that drop because of Dor Yeshorim? Maybe, but Dor Yeshorim doesn't keep data on who gets married or not, so there's no direct way of knowing. All the stories in the book are fascinating, but my favorite chapter covered the Clinic for Special Children in Strasburg, Pennsylvania. The doctors in this story sound the parents in the movie Lorenzo's Oil. They are working with children who suffer from inherited errors of metabolism, more common in groups such as the Mennonites and Amish, and using their knowledge of biochemistry and nutrition to devise strategies for treatment. Did Masha Gessen cut her breasts off? I won't tell you, but you won't reget reading the book to find out.

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