Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing

Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing

by Robert L. Klitzman
     
 

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In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get

Overview

In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results.

Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes—often in the person's own words—how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries—whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow.

Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years.

"An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all."
—Paula Zahn

"Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly."
—Kay Redfield Jamison, author of An Unquiet Mind

"An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk."
—Thomas H. Murray, President and CEO, The Hastings Center

Editorial Reviews

Doody's Review Service
Reviewer: Stephanie Solomon, PhD (Saint Louis University)
Description: This is an extended discussion of the results of semistructured interviews with persons at risk for three genetically-linked diseases: breast/ovarian cancer, Huntington's disease, and alpha-1 antitrypsin deficiency.
Purpose: The book shows the variety of ways that the interviewees deal with decision-making related to their risk for disease and the results of their choices. Though somewhat successful, the author is overly ambitious with his project: each chapter could easily be a book in itself.
Audience: Although the frequent references to scholarly work on the issues as well as to philosophical and psychological traditions indicate an intention to appeal to a scholarly audience, this book does not engage the issues with sufficient rigor or depth to appeal to this audience. On the other hand, it is a novel resource for patients and practitioners who are entering into the world of genetic testing and want an introduction to the types of issues that arise and the different ways that people deal with them.
Features: The book proceeds roughly chronologically, from the initial decisions to test, to the understanding of what the results mean, to treatment decisions, to decisions about with whom to share the information, to implications of these decisions for communities, and policy. What this book does best is put each often-discussed issue into the patient's own words. The quotes are often insightful, sometimes sad, and frequently illuminating. The other strength of this book, which is also a weakness, is its breadth. Although the author at times refers to his data as "contradicting" or "undermining" prevailing views, and he indeed questions the accuracy of many theories, he has lost the ability to show patterns sufficient to challenge theories due to this breadth.
Assessment: While the unique approach of presenting patients' views in their own words is laudable, the patients themselves often get lost in the vast scope of the book and the author is forced to remind readers constantly of patients' identities with macabre cocktail party introductions. The book would have been better broken out into a series, with more focus in each one, rather than a compendium that overwhelms readers with its mass of information and complexity. This being said, the book provides a novel window into the world of regular people facing unprecedented problems in the new world of genetic technologies, and the author is correct in noting that we have a lot to learn from these pioneers.
From the Publisher
In Am I My Genes?, the psychiatrist and ethicist Dr. Robert L. Klitzman plunges readers into the world of genomic medicine as it exists today: a barely mapped terrain of immense overlapping uncertainties...this book should make compelling reading for anyone considering genetic testing for these or any other conditions: It provides an instant community of fellow travelers along with a sophisticated moderator."
-Abigail Zuger, M.D., New York Times

"Am I My Genes? should be required reading for students of genetic counseling—and for people facing the challenges of genomic health in their own lives." — Michael A. Goldman, Science Magazine

"The greatest strength of the book is the detail and nuance it offers based on in-depth interviews andKlitzman's careful parsing of the different issues the interviewees face.... As Klitzman concedes, he has "raised more questions than [he has] wholly answered." But that is his goal: "to illuminate the wide range of complexities and challenges that genetics can pose, to help ready us—as individuals and as a broader society— for the onslaught of genetic information that is fast approaching, whether we want it or not" (321). Klitzman has succeeded in brightly illuminating those challenges." — Sonia M. Suter, GeorgeWashington University Law School, The American Journal of Bioethics

"The book provides a novel window into the world of regular people facing unprecedented problems in the new world of genetic technologies, and the author is correct in noting that we have a lot to learn from these pioneers." — DOODY'S

Library Journal
As the world of information available through genetic testing expands, so does the number of people confronted with the issues that arise as a consequence. Klitzman (psychiatry & bioethics, Columbia Univ.) presents the results of interviews with 64 individuals affected by Huntington's disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. Learning about their attitudes and approaches to dealing with the range of choices, he thinks, will be useful to readers with personal genetic issues as well as to the professionals, family members, friends, and colleagues in their lives. Much of the book consists of quotes from those interviewed, with comments and supplemental information from the author. Sections cover whether to be tested, with whom to share results, and how the interviewees see themselves. They also help readers understand treatment decisions, reproductive choices, privacy and insurance issues, wider disclosure (including to genetic communities/support groups), and global genetic politics. VERDICT The individual comments on each topic are wide-ranging and make it clear that there are no simple answers. This book will be especially helpful to readers deciding whether to be tested or dealing with a positive result.—Dick Maxwell, Porter Adventist Hosp. Lib., Denver

Product Details

ISBN-13:
9780199837168
Publisher:
Oxford University Press
Publication date:
03/01/2012
Pages:
376
Sales rank:
879,824
Product dimensions:
6.00(w) x 9.30(h) x 1.40(d)

Related Subjects

Meet the Author

Robert Klitzman is Professor of Clinical Psychiatry and the Director of the Masters of Bioethics Program at Columbia University. He co-founded and for five years co-directed the Columbia University Center for Bioethics, and is the Director of the Ethics and Policy Core of the HIV Center. He is the author of When Doctors Become Patients, A Year-long Night: Tales of a Medical Internship, In a House of Dreams and Glass: Becoming a Psychiatrist, and other works.

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