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Blood Matters: From BRCA1 to Designer Babies, How the World and I Found Ourselves in the Future of the Gene

Blood Matters: From BRCA1 to Designer Babies, How the World and I Found Ourselves in the Future of the Gene

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by Masha Gessen

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Masha Gessen discovered through genetic testing that she had the dreaded BRCA1 genetic mutation--the same mutation made famous recently by Angelina Jolie, which predisposes women to ovarian and breast cancer. As Gessen wrestled with a wrenching personal decision—what to do with such knowledge—she explored the landscape of a brave new world, speaking


Masha Gessen discovered through genetic testing that she had the dreaded BRCA1 genetic mutation--the same mutation made famous recently by Angelina Jolie, which predisposes women to ovarian and breast cancer. As Gessen wrestled with a wrenching personal decision—what to do with such knowledge—she explored the landscape of a brave new world, speaking with others like her and with experts including medical researchers, historians, and religious thinkers.

Blood Matters is a much-needed field guide to this unfamiliar and unsettling territory. It explores the way genetic information is shaping the decisions we make, not only about our physical and emotional health but about whom we marry, the children we bear, even the personality traits we long to have. And it helps us come to terms with the radical transformation that genetic information is engineering in our most basic sense of who we are and what we might become.

Editorial Reviews

It hadn't been Masha Gessen's intention to become a participant in the unfolding history of genetics. Over the past decade, this Russian investigative journalist had won international recognition for family memoirs and her reporting on the AIDS crisis. When a 2004 test revealed that she had a genetic predisposition to ovarian and breast cancer, she received the news as both a personal threat and an opportunity. With the same relentless spirit that characterized her work for Slate and The New Republic, she researched the cutting-edge possibilities of genetic testing even as she was grappling with difficult personal decisions about preventive procedures and treatments. Gripping, informative, and perhaps prophetic.
Susan Okie
Masha Gessen faced a searing personal dilemma. At 37, this journalist and mother of two young children learned that she had inherited a genetic mutation that greatly increases its possessor's risk of breast and ovarian cancer. Many doctors advise such women to have their breasts and ovaries preventatively removed—as Gessen puts it, "cutting off their breasts to spite their genes." To force herself to decide what to do, and to gain a measure of psychological distance, Gessen contracted with Slate magazine to write a series of articles on her decision-making process, promising that she would reveal her choice in the last one. That desperate research lies at the heart of this book, and the author's unusual emotional investment in the topic renders her exploration of the world of genetic testing far more nuanced and insightful than a mere scientific primer.
—The Washington Post
Jennifer Senior
While it was Gessen's misfortune to have inherited her mother's cruel mutation, 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…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.
—The New York Times
Publishers Weekly

This energetic but unfocused account awkwardly merges several strands: the author's experience with the threat of breast cancer, discussions of genetic inheritance in Jewish families and a look at how the ability to test for genetic predispositions to various diseases is changing lives. With a family history of breast cancer, journalist Gessen (Dead Again: The Russian Intelligentsia After Communism) was not surprised to learn she had inherited a "deleterious mutation" in the BRCA1 gene, one of two genes known to be linked to breast and ovarian cancer. The BRCA1 mutation was first discovered in Jewish women, a "compact population" with a higher-than-average breast cancer rate. Gessen describes her narrow options, with "nondirective counseling" steering her toward prophylactic removal of her breasts and ovaries. Then she jumps the track to talk about Dr. Henry Lynch, who, in 1966, first suggested that predisposition to cancer might be hereditary. Gessen also covers Huntington's disease, maple syrup disease among Old Order Mennonites, eugenics and how a genetic testing program is affecting marital choices for some Orthodox Jews. Gessen covers a fair amount of ground, but in a haphazard fashion. The book's strongest parts are on genetics and heredity in the Jewish community. (Apr.)

Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
Library Journal

An experienced journalist exploring issues that bear directly on her own life and health, Gessen here shares a personal journey that began in 2004, when she learned she had a "deleterious mutation" in a BRCA1 gene that predisposed her to ovarian and breast cancer. Like many of the people whom she interviewed for this book, Gessen faced decisions none thought or had to make just a few years earlier, beginning with whether to be tested at all. She unflinchingly describes her feelings, the reasons for her choices, and their consequences, also surveying the state of the science as practiced from academic medical centers to a clinic in the heart of Amish country. The narratives are fascinating, and the research is well documented. This distinctive combination of personal narrative and objective account tackles a subject that will continue to become increasingly important to us all; recommended for public libraries where patrons are proactive about their health.
—Dick Maxwell

Kirkus Reviews
Unsettling medical memoir by a worried-but-still-well journalist who carries a breast-cancer gene. Gessen (Ester and Ruzya: How My Grandmothers Survived Hitler's War and Stalin's Peace, 2004, etc.) has steeped herself in genetics lore-and conjecture-in this wide-ranging account of genetic information past, present and future. Her own story is often the focus, as she relates the deaths of her mother and other relatives from breast or ovarian cancers and traces the inheritance of the BRCA1 gene to her great-great-grandmother. The mother of one adopted and one biological child, she is considering having another baby, but the genetic counselor she consults advises an ovariectomy and perhaps a double mastectomy. As Gessen wrestles with decision-making, the text increasingly leans toward a deterministic view of genetic destiny: The BRCA genes do not simply increase the odds of cancer; they cause it, with more stubborn forms occurring at an earlier age. This pessimism colors her account as she reviews the history of genetics from the horrors of eugenics and Nazism to the discovery of the gene for the sickle-cell trait, which persists in the population because it increases protection against malaria. There is much discussion of Ashkenazi Jews and their genetic load of diseases, as well as the genetic problems of other groups. She lauds the clinicians who work with Amish and Mennonite groups in Pennsylvania, developing diets to stave off the worse effects of inherited metabolic diseases. Gessen rightly addresses such issues as the reliability of the new genome-testing firms and the value of tests in cases like Huntington's, where the disease is inevitable but as yet untreatable in carriers. Butthe text is again disturbing as she moves on to discuss controversial behavior-related genes, even pondering whether her young son's Russian heritage may make him vulnerable to alcoholism. Credit Gessen with absorbing gobs of information, but this is a case in which a little learning may be a dangerous thing-for the author and her readers. Agent: Elyse Cheney/Elyse Cheney Agency
The New York Times

"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 ... The enduring memory one takes away is Gessen''s intelligence and wit as she''s staring down the barrel of a gun."

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Blood Matters From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene

By Gessen, Masha Harcourt Copyright © 2008 Gessen, Masha
All right reserved.

ISBN: 9780151013623

Chapter 1 

My Mother’s Fatal Flaw
I spent the day of August 21, 1992, driving to a mountainous desert town whose name, in the scorching heat and fine dust, was a seductive mockery: Palm Springs, California. I had embarked upon the most Californian of endeavors, an editorial retreat for the Los Angeles–based magazine where I worked. I ate dinner with my colleagues at a bland Mexican restaurant. I had two margaritas, talked more than I usually did, and told a story that left me vaguely uneasy, as I always feel when I talk about my mother: I cannot talk about her without telling lies. I do not remember what I said, but it was something complimentary, even prideful, I think, and though I loved my mother and was proud of her, talking of her in that way, with all that had gone wrong between us, was most certainly a lie.
           I woke up at four that morning, in the bedroom of a rental bungalow, with a wave of nausea pushing its way up to my burning throat. I stumbled to the bathroom, drank from the tap and threw cold water on myself, washing my face and headclumsily, then looked at my bloated face in the mirror and wondered how two margaritas could have done this to me. I went back to bed and next opened my eyes at a few minutes before seven, without a trace of a hangover but with a sudden wakefulness I could not fight. With hours to kill before the meetings began, I tried going out for a walk in the desolation of Palm Springs, considered a swim in the kidney-shaped pool, and finally went back inside the bungalow intending to read some magazine submissions. I spread them out on the coffee table and, before starting, picked up the phone and dialed my parents in Boston. I was checking in at least daily back then and knew they would be awake—they were three hours ahead. These considerations were background noise; I had picked up the phone without pausing to think, just getting one of my daily chores out of the way while I had time to kill.
           A strange male voice answered the phone.
           “Papa?” I asked, knowing that it was not.
           “Hold a minute,” the man said nervously, and a moment later my father came on the line.
           My mother was dead. The man answering the phone was a policeman who had come to fill out a report, which, as it turned out, was a necessary part of letting someone die at home.
           My mother had been diagnosed with breast cancer two years earlier. By the following summer, it had already spread to her bones, and then it got to her liver and killed her.
           My mother had last woken up at seven that morning—four o’clock in California, when I had first awakened—and asked for ice cream. Her liver was failing. Her throat must have been burning up. She died a few minutes before ten. That was the moment I had bolted awake for the second time, the bizarre toxic symptoms of three hours earlier mysteriously gone, and my inextricable physical relationship to my mother proven to me for the first time in my conscious life—at the moment hers ended.
The second time the physical relationship proved itself was on January 28, 2004, at a coffee bar in Cambridge, Massachusetts—an accidental location I shall avoid in the future, much as I have avoided revisiting Palm Springs. I was sitting at a small square table, trying to fix my ailing laptop, when my cell phone rang and a professionally sensitive woman’s voice said, “I am returning your call. The results of your tests have arrived. And there is a change.” She paused. “In the BRCA1 gene, there is deleterious mutation.” She paused. “I’m sorry.”
           BRCA stands for “breast cancer.” BRCA1 and BRCA2 are two genes known to play a role in the development of breast and ovarian cancer. The caller was a genetic counselor informing me that my mother had passed on to me a mutant gene. I was surprised. I was shocked. I should not have been. I had gone to get tested, I had known enough to know that I was a likely candidate for the mutation, but I was convinced that I was negative. Even if my mother had been a carrier—I could not know, because she died before the gene was discovered—I had only a 50 percent chance of having inherited it. That night in Palm Springs had taught me nothing: I was certain I was immune to my mother’s physical legacy.
           Something had gone wrong between me and my mother, something so profound and so old that I find it difficult to describe. There was no tragic fight, no horrible misunderstanding. For as long as I can remember, we simply felt like strangers, not particularly intimate ones except by virtue of circumstance: We happened to live together. Nothing between us was ever unconditional, not even our physical proximity. I left home at fifteen.
           My mother died before we had had much chance to claim our tiny islands of common ground: before I wrote anything she—also a writer and a translator—would have enjoyed reading, before I translated my first book, using what I had learned from watching her work, and before I too became a mother. When I started writing professionally, she said proudly, “My genes have won out.” I remember being surprised, and silently dissenting: I did not doubt my mother’s gifts, but I never believed they were also mine. I counted on more—and less. My mother was a more talented writer, a more diligent reader, and a more enterprising student. She was also handicapped by a desperate fear of people, and that fear could turn routine communication into a feat of heroism. She died at forty-nine, still gifted but not accomplished: Even if by external measure she could be considered successful, she felt anonymous and overlooked. I think that long-ago conversation with my colleagues in Palm Springs had in fact concerned my mother’s career achievements, and this was why it had left me so uneasy. I knew the fear too, but of necessity I learned to get out and make my way among people early, and I had always thought that this was why I had done well with barely half of her gifts. I had assumed I was simply better at living than she had been. And even though, like all daughters of mothers who die young, I had a difficult time visualizing myself past a certain age, I had always, without really thinking about it, assumed that I would make better of what I had, and for longer, because I am not as afraid. I thought my gifts were my own, making me free from her legacy altogether. Then I found out that I got everything from her, including the flaw that killed her.
           I learned the basics of the story of my flaw. I carry a genetic mutation that kills women early—earlier and earlier with each generation—through breast and ovarian cancer. “My” gene was identified about two years after my mother died and ten years before I tested positive for the mutation. It seems to be a gene that works as a tumor suppressor—unless it is damaged, as it was in my mother’s case and is in mine. The hereditary roulette works as follows. For most people, the genome consists of one pair of sex chromosomes (XX in women and XY in men) and twenty-two pairs of chromosomes called autosomal, plus mitochondrial DNA, which is something of a separate story. The autosomal chromosomes contain two copies of every gene, one inherited from the mother and one from the father. The BRCA1 gene resides on chromosome 17. Those born with a mutation have one normal copy and one damaged one. A child born to a parent who has a mutation has a 50 percent chance of inheriting it. If a female child inherits a BRCA1 mutation, her lifetime risk of breast cancer may be as high as 85 percent, and the risk of ovarian cancer may go up to more than 50 percent. For some reason, probably having to do with the environment or diet or lifestyle, these days women with the mutation are getting the cancers at an earlier age than their mothers’ and grandmothers’ generations.
           If a fetus inherits two bad copies of a BRCA gene—one from each parent—it will not be viable. A girl baby who is born with only one defective copy of the gene will not develop cancer as long as the other copy is functioning. But when the “good” copy also suffers a mutation—as, it seems, will happen in most cases—cancer will develop, and the disease may be more aggressive than in people without such mutations. A male child with the mutation may also eventually develop breast cancer, but this happens far less frequently. The risk of cancer goes up steadily with age: about 20 percent by age forty, 40 percent by age fifty. Rarely do women under thirty develop the cancer, and the chances of cancer only pass the 50 percent mark at around the age of fifty-five. So throughout human history, a woman would most likely become sick after she had given birth to and raised her children. For modern women, particularly western Jewish professional ones who have children later, the mutation may bring cancer before the child-rearing years are past.
Copyright © 2008 by Masha Gessen
All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopy, recording, or any information storage and retrieval system, without permission in writing from the publisher.
Requests for permission to make copies of any part of the work should be submitted online at harcourt.com/contact or mailed to the following address: Permissions Department, Houghton Mifflin Harcourt Publishing Company, 6277 Sea Harbor Drive, Orlando, Florida 32887-6777.


Excerpted from Blood Matters by Gessen, Masha Copyright © 2008 by Gessen, Masha. Excerpted by permission.
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Meet the Author

MASHA GESSEN is a journalist who has written for Slate, Seed, the New Republic, the New York Times, and other publications, and is the author of two previous books. She lives in Moscow.

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