The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids--and the Kids We Have

by Bonnie Rochman

Overview

A sharp-eyed exploration of the promise and peril of having children in an age of genetic tests and interventions

Is screening for disease in an embryo a humane form of family planning or a slippery slope toward eugenics? Should doctors tell you that your infant daughter is genetically predisposed to breast cancer? If tests revealed that your toddler has a genetic mutation whose significance isn’t clear, would you want to know?

In The Gene Machine, the award-winning journalist Bonnie Rochman deftly explores these hot-button questions, guiding us through the new frontier of gene technology and how it is transforming medicine, bioethics, health care, and the factors that shape a family. Rochman tells the stories of scientists working to unlock the secrets of the human genome; genetic counselors and spiritual advisers guiding mothers and fathers through life-changing choices; and, of course, parents (including Rochman herself) grappling with revelations that are sometimes joyous, sometimes heartbreaking, but always profound. She navigates the dizzying and constantly expanding array of prenatal and postnatal tests, from carrier screening to genome sequencing, while considering how access to more tests is altering perceptions of disability and changing the conversation about what sort of life is worth living and who draws the line. Along the way, she highlights the most urgent ethical quandary: Is this technology a triumph of modern medicine or a Pandora’s box of possibilities?

Propelled by human narratives and meticulously reported, The Gene Machine is both a scientific road map and a meditation on our power to shape the future. It is a book that gets to the very core of what it means to be human.

Product Details

ISBN-13:	9780374160784
Publisher:	Farrar, Straus and Giroux
Publication date:	02/28/2017
Pages:	288
Product dimensions:	6.10(w) x 9.10(h) x 1.20(d)

About the Author

Bonnie Rochman is an award-winning journalist. A former health and parenting columnist for Time.com and staff writer for Time magazine, she has written for The New York Times Magazine, The Wall Street Journal, MIT Technology Review, Scientific American, and O, The Oprah Magazine. She lives in Seattle with her husband and three children.

Table of Contents

Introduction 3

1 How the Jews Beat Tay-Sachs: Screening for Disease Before Pregnancy 17

2 Playing God: How Preimplantation Genetic Diagnosis Is Rewriting Family History 45

3 The Other Scarlet "A": Abortion's Relationship to Genetic Testing 73

4 Silencing a Gene: The Future of Down Syndrome 101

5 What Do Parents Want to Know? Grappling with Variants of Uncertain Significance 127

6 The Right to an Open Future: Navigating the Return of Results 153

7 How to Hunt a Zebra: Ending the Rare-Disease Diagnostic Odyssey 179

8 The Genie in the Bottle: Sequencing Newborn Babies 203

Notes 231

Acknowledgments 257

Index 261

Editorial Reviews

★ 01/09/2017
Journalist Rochman takes a calm, thorough, and nonsensationalist look at core bioethical questions surrounding an array of reproductive health issues as well as the ethical spaces where what can be done and what should be done come into conflict. She clearly and accessibly describes cutting-edge technologies for the general reader without succumbing to faddish, uncritical enthusiasm. Rochman solicits the perspectives of doctors, researchers, legal experts, and families in order to focus on humanist factors, such as how doctors should counsel, how having nonactionable information still affects parental prerogatives, and whether people have a right to an “open future” in light of increasing access to genetic testing. She digs into the toughest topics, including whether using screening results to vet potential quality-of-life factors approaches a new eugenics, if people with such differences as genetic deafness should be able to select for a child with that trait, if gene therapies that turn off genes for Down syndrome should be used on children, and whether parents have a right to test their children and access their data concerning diseases that do not manifest until adulthood. Rochman’s thoughtful take highlights important issues for parenting in an increasingly high-information world. (Mar.)

Publishers Weekly

"An exciting, informative, and lucidly written book about genes and the future." —Siddhartha Mukherjee, Pulitzer Prize-winning, bestselling author of The Gene and The Emperor of All Maladies

"Knowledge is power, and it’s especially empowering when you’re pregnant. But with genetic technology, mining an overwhelming amount of information from the moment of conception (and before!) on, how do parents sort through what they need to know, what might be nice to know, and what they might be better off not knowing about the baby they’ve created or will create? What screens and tests should they opt for—and what is this about sequencing? The Gene Machine provides parents with a clear-eyed explanation of the promise and pitfalls of ever-evolving genetic technologies so that they can make clear-eyed decisions about the unprecedented choices they’ll be facing on their baby-making journey." —Heidi Murkoff, bestselling author of the What to Expect When You’re Expecting series

"Knowledge can be power, but as Rochman rightly points out, sometimes the ability to know doesn’t mean one should know. Solid research into dilemmas regarding screening and how it is used for fetuses and newborns." —Kirkus Reviews

"The author delves into an intriguing and intimate topic with sensitivity and compassion . . . For anyone who has or will have children as well as those with an interest in genetics and popular science." —Tina Chan, Library Journal

"Bonnie Rochman's The Gene Machine is as profoundly important and timely as it is readable and relatable. Through deeply human stories, Rochman unpacks the complicated science of genetics and how it has changed the ways we build and understand our families in the modern world. In short, this is genetics with a human face." —Emily Rapp Black, New York Times bestselling author of The Still Point of the Turning World

"Bonnie Rochman has taken a subject that every parent worries about but few understand, and made it accessible, urgent, and humane. The Gene Machine is like a guidebook to the future. It will be invaluable for many families." —Bruce Feiler, New York Times bestselling author of The Secrets of Happy Families

"Bonnie Rochman dives into the turbulent waters of genetic testing and emerges with The Gene Machine, a smart and compassionate account of this ever-advancing science. Her curiosity and compelling narrative will challenge you to consider all the 'what-ifs' of the future of gene sequencing. Go on this journey with her. Take the plunge. You'll come away enthralled and informed." —Randi Hutter Epstein, M.D., M.P.H., author of Get Me Out: A History of Childbirth from the Garden of Eden to the Sperm Bank

"How much do you really want to know about the future health of your children or yourself? In The Gene Machine, Bonnie Rochman provides us with a beautifully written, thoughtful examination of this complex issue. It is a must-read for anyone grappling with the brave new world of genetic possibilities." —Richard Berkowitz, professor of obstetrics and gynecology, Columbia University; former Chair of the Department of Obstetrics and Gynecology at the Mt. Sinai School of Medicine

"The Gene Machine is a great read. Bonnie Rochman negotiates the pros and cons of genetic technologies and humanizes scientific endeavors by venturing into the hearts and homes of families facing tough choices caused by the hardship of inherited disease." —Dr. James Grifo, director of the New York University Langone Fertility Center

From the Publisher

2016-12-14
When scientific ability and human desire coalesce into a potent tool that can profoundly change life.As more research is conducted on the human genetic code, scientists, doctors, and parents will have an increasing number of options regarding how this information is used. Beginning with Tay-Sachs, a fatal neurological disease commonly found among Ashkenazi Jews, former Time health and medicine columnist Rochman clearly discusses how genetic screening has helped Jews avoid passing the disease on to their offspring. She also explores the multiple layers of morality and ethics involved in the process of prenatal carrier screening. For those with a definite genetic predisposition to a life-threatening or deadly defect, the testing can provide answers while there is still time to discuss pregnancy or abortion. But what are the options if a fetus is diagnosed with cystic fibrosis, Down syndrome, or a host of other abnormalities? With the use of in vitro fertilization, doctors can implant only those embryos that show no signs of a genetic abnormality, and parents are making decisions about their offspring based on these genetic tests. These are just some of the difficult scenarios Rochman outlines in the narrative, which is full of interviews with doctors, parents, and those in the scientific community. The author also examines the conflicts surrounding the knowledge of potential problems that only manifest later in life, such as Alzheimer's disease—should parents be told their child is predisposed? For some parents, the advance knowledge created a state of anxiety, inhibiting their ability to fully relax and enjoy the many nonafflicted years their child had before them. Knowledge can be power, but as Rochman rightly points out, sometimes the ability to know doesn't mean one should know. Solid research into the dilemmas regarding genetic screening and how it is used for fetuses and newborns.

Kirkus Reviews