His Brother's Keeper: A Story from the Edge of Medicine [Hardcover]

Jonathan Weiner (Author)

Book Description

Publication Date: March 16, 2004

From Jonathan Weiner, Pulitzer Prize-winning author of The Beak of the Finch, comes His Brother's Keeper -- the story of a young entrepreneur who gambles on the risky science of gene therapy to try to save his brother's life.

Stephen Heywood was twenty-nine years old when he learned that he was dying of ALS -- Lou Gehrig's disease. Almost overnight his older brother, Jamie, turned himself into a genetic engineer in a quixotic race to cure the incurable. His Brother's Keeper is a powerful account of their story, as they travel together to the edge of medicine.

The book brings home for all of us the hopes and fears of the new biology. In this dramatic and suspenseful narrative, Jonathan Weiner gives us a remarkable portrait of science and medicine today. We learn about gene therapy, stem cells, brain vaccines, and other novel treatments for such nerve-death diseases as ALS, Alzheimer's, and Parkinson's -- diseases that afflict millions, and touch the lives of many more.

It turns out that the author has a personal stake in the story as well. When he met the Heywood brothers, his own mother was dying of a rare nerve-death disease. The Heywoods' gene therapist offered to try to save her, too.

"The Heywoods' story taught me many things about the nature of healing in the new millennium," Weiner writes. "They also taught me about what has not changed since the time of the ancients and may never change as long as there are human beings -- about what Lucretius calls ‘the ever-living wound of love.'

"The Heywoods mean the whole story to me now: an allegory from the edge of medicine. A story to make us ask ourselves questions that we have to ask but do not want to ask. How much of life can we engineer? How much is permitted us?

"What would you do to save your brother's life?"

Editorial Reviews

From Scientific American

Not long ago I got an e-mail from Nikki. My high school friend turned lawyer now communicates solely by laptop, propped in an electric wheelchair, twitching her lip to activate her keyboard. She is fed through a stomach tube, and a ventilator breathes for her 24/7. If a fly lands on her face, she is powerless to brush it away. Nikki has amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. So do 30,000 other Americans, of whom 8,000 die every year. Stephen Heywood, a six-foot-three carpenter from Boston, was 28 when his motor neurons began to fail. The earliest clue was subtle: he lost his first arm wrestling match in years to his older brother, Jamie. Then he couldn't turn a key in the front door of a house he was restoring. A year later he stumbled and pitched headfirst down a stairway. ALS is nothing if not relentless. Jonathan Weiner's latest book, His Brother's Keeper, is about ALS plus much more. Part biography, part autobiography, it deals with a family's journey into a previously unimaginable realm, Gen Xer Jamie Heywood's desperate desire to use genetic and stem cell technology to turn the tide of Stephen's disease, the author's coming to terms with his own mother's agonizing decline from another form of nerve death, and the current era of "anything is possible now" science. Weiner won the Pulitzer Prize for his 1994 book about evolution, The Beak of the Finch. In His Brother's Keeper, his prose is just as graceful and steady but far more personal and revealing. Like his subjects, Weiner is also on a journey. Clearly, a kinship links the author and the Heywood brothers. For one thing, they share eerily similar intellectual roots. Stephen and Jamie's father is a mechanical engineer on the faculty at the Massachusetts Institute of Technology (Jamie also graduated from M.I.T. with a degree from his dad's department). Jerome Weiner, Jonathan's father, is an engineering professor at Brown. In the course of the book, Weiner asks his father about Jamie's extreme makeover from high-tech entrepreneur to guerrilla bioscientist. His father replies by likening genes, DNA and protein to any other system--a pulley, a circuit, an engine. At which point the writer adds drily: if what has broken is nothing but a system made of molecules, engineers try to fix it. Unfortunately, ALS is not that easily fixed. When Stephen was diagnosed in 1998, the only FDA-approved drug for the disease was a glutamate blocker (glutamate is a chemical that carries signals between the brain and the spinal cord but also damages the nervous system when released in excess). Convinced that repairing the glutamate transporter protein system is a hopeful tactic for ALS sufferers, Jamie and his scientific collaborators Jeffrey Rothstein of Johns Hopkins University and Matt During of Jefferson Medical College plan to insert the corresponding gene in Stephen's cells. Until fate works against them, that is. A teenager with a rare metabolic disease dies after undergoing experimental gene therapy, Jamie's project is tabled, and During proceeds to plan B: injecting millions of stem cells into Stephen's spinal canal. I longed to hear more from two voices throughout this otherwise fine and moving book. Over a 25-year career, Robert Brown, the ALS specialist at Harvard Medical School who diagnosed Stephen, has led thousands of patients where no one wants to go: the edge of a cliff looking straight down. His perspective would have balanced Jamie's frantic race for a magic bullet. The other voice I missed was Stephen's. Not his matter-of-fact statements, which do weave through the narrative, but his inner thoughts. Was this omission dictated by Stephen himself or the author's delicacy, I wondered. The 1990s--officially deemed "The Decade of the Brain"--did yield remarkable new facts about the human nervous system as well as breakthroughs in ways of reengineering cells. What is both poignant and telling is Jamie's (and possibly Weiner's) notion that science might, as a result, rescue ALS victims on a specific timetable. Medical miracles do not obey timetables, even in an era of quantum scientific leaps.     But there are other miracles in this book and in the lives of ALS patients. In 1999 Jamie Heywood launched a fledgling organization called the ALS Therapy Development Foundation. Today it is well funded and staffed, supporting a number of important research efforts. Stephen Heywood married and had a child, despite the inexorable progress of his disease. And Nikki, my dear friend, continues to engage with life: electronically overseeing her household; cheering husband, family and friends; attending her kids' school and sports events and a biweekly book club. In ALS, the triumph of the human spirit is the greatest miracle. His Brother's Keeper may focus on the promise of science, but the mystery of transcendence also speaks from its pages loud and clear.

Claire Panosian Dunavan is professor of medicine and infectious diseases at the David Geffen School of Medicine at U.C.L.A. and a medical writer.

From The New England Journal of Medicine

Jonathan Weiner is a talented science writer. He won a Pulitzer Prize for his book on Darwin's finches and a National Book Critics Circle Award for one on the genetics of behavior in drosophila. Here he tells the poignant story of Stephen Heywood, a carpenter whose right hand became weak in 1997; he was 28 years old. The diagnosis of amyotrophic lateral sclerosis (ALS) was confirmed later; only 5 percent of all people with ALS have symptoms before the age of 30. Also known as Lou Gehrig's disease, ALS is incurable and lethal. Stephen's brother, Jamie, was working as an assistant to Nobel Prize winner Gerald Edelman at the Neurosciences Institute outside San Diego, California. An engineer trained at the Massachusetts Institute of Technology, Jamie Heywood was hired to bring think-tank discoveries to market, and with his commitment to saving his brother's life, he came upon the idea of gene therapy. Weiner heard about the plan from a neuroscientist friend and was himself primed for the project. He had promised to write an article for the New Yorker, and he had a personal interest: his mother had been diagnosed with another nasty neurologic disease, a parkinsonism-behavior-dementia disorder, also incurable. Weiner contacted Jamie Heywood and rapidly became part of the project himself. He was attracted by the pursuit of an idea at "the edge of medicine," a fuzzy line where hope blurs with harsh reality. Jamie created a foundation to develop the idea. He enlisted the aid of two of the most outstanding ALS investigators: Robert Brown at Harvard, who had confirmed the diagnosis, and Jeffrey Rothstein at Johns Hopkins, who had found that the malfunction of a particular gene in ALS could result in the accumulation of glutamate, a natural neurotransmitter; an excessive amount of glutamate could be toxic to motor neurons. Jamie also found Matthew During, a Philadelphia neurosurgeon, who would insert corrective genes directly into Stephen's spinal cord. Weiner tells the story as though it were powerful fiction by focusing on the personal aspects of the case but not ignoring the social issues. In the end, gene therapy was halted when a teenage volunteer in a trial at the University of Pennsylvania died. So instead of the gene, Stephen's doctors injected stem cells into his cerebrospinal fluid; this was not harmful but gave no benefit. Some call it "guerrilla science" when families direct research themselves because they are impatient with the bradykinetic pace of conventional research. It can take years to develop an experimental approach, prepare an application for funding, wait until the application is reviewed and revised, and finally get started on the research. Stephen's family did not know how long he would live. In fact, he is still alive in 2004, but at the time it seemed that he might live only a year or two. They were understandably in a hurry. Rothstein was involved at two levels. His research findings had provided the idea of gene therapy. By the time that approach was scratched, he had become a leader in stem-cell research. Throughout the book, Rothstein is quoted as a voice of caution; animal experiments should precede human application, he warns, to ensure safety and to provide evidence of efficacy. In the end, Jamie Heywood raised millions of dollars -- a story in itself. His foundation's Web site now lists six doctoral scientists who focus on "high-throughput drug development" and screen thousands of compounds already approved for other uses by the Food and Drug Administration. The trick is to develop an assay that reliably predicts which drugs could be beneficial in treating ALS. Among the questions raised in the book are whether the company could raise more research money as a for-profit or a nonprofit entity, whether someone with a deadly disease can give truly informed consent to participate in risky human experiments, whether nonscientists can "pick something to do that the researchers in the field didn't pick," and whether conventional science is too timid in moving from laboratory to sick people. Can we learn from this experience? Stephen's hope rests on the remarkable progress made in the past decade and now accelerating worldwide. Most funding comes from the National Institutes of Health; private donors choose from organizations like the Muscular Dystrophy Association or the ALS Association, family sponsors like the Heywoods or the Estess family's Project ALS, or medical schools. Supporting fundamental ALS research is laudable in all these approaches. In the meantime, both of the Heywood brothers have married and had children. Readers will appreciate their fascinating story and will certainly join them in the hope that basic research will pay off. All of us who are engaged in patient care and research in ALS devoutly believe it will, but when? Lewis P. Rowland, M.D.
Copyright © 2004 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.

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Product Details

• Hardcover: 356 pages
• Publisher: Ecco; 1 edition (March 16, 2004)
• Language: English
• ISBN-10: 006001007X
• ISBN-13: 978-0060010072
• Product Dimensions: 9.3 x 6.5 x 1.3 inches
• Shipping Weight: 1.5 pounds
• Average Customer Review: 4.2 out of 5 stars  See all reviews (11 customer reviews)
• Amazon Best Sellers Rank: #727,711 in Books (See Top 100 in Books)

More About the Author

Jonathan Weiner is one of the most distinguished popular-science writers in the country: his books have won the Pulitzer Prize, the National Book Critics Circle Award, and the Los Angeles Times Book Prize. His writing has appeared in The New Yorker, Slate, Time, The New York Times Magazine, The Washington Post, The New Republic, Scientific American, Smithsonian, and many other newspapers and magazines, and he is a former editor at The Sciences. His books include The Beak of the Finch; Time, Love, Memory; and His Brother's Keeper. He lives in New York, where he teaches science writing at Columbia University's Graduate School of Journalism.

Customer Reviews

Most Helpful Customer Reviews

19 of 21 people found the following review helpful:

5.0 out of 5 stars A compelling page-turner, March 22, 2004

By A Customer

This review is from: His Brother's Keeper: A Story from the Edge of Medicine (Hardcover)

Jonathan Weiner, the pulitzer-prize winner for The Beak of the Finch, has tackled a subject that most of us will have to face sometime in our lives: a medical crisis in the family. He brings us, as he says in his subtitle, to the edge of medicine with a startlingly honest and moving account of an amazing family, the Heywoods. Stephen Heywood, a handsome young carpenter, is just finding himself when he can't make a door open by turning a key. When Weiner shows us that moment, we already know instinctively that something is really wrong, and also that something about this guy and his family will make it not an ending, but a beginning. That is the key to the book: how one family takes a devastating diagnosis and turns it into a quest for a cure. The focus is James Heywood, Stephen's brother, who turns his own life around (to great sacrifice in some ways) to find a cure for his brother. It's a superhero effort, and I won't give away if it "works" or not. What it does do is make a page-turning and incredibly meaningful and important story. Weiner brilliantly juxtaposes his own family's reaction to his mother's eerily similar illness. His family reacts much more normally--the way most of us do--with fear, sadness, anger, and eventually coping. That we strongly identify with the Weiner family as well as with the Heywood family brings this book into the level of Epic. It's as if he is telling the whole human reaction to illness in one tale, and he pulls it off like the master he is. If that isn't enough, he gives us the Big Picture of biomedicine today, and helps us understand the promises and the dangers of gene therapy, stem-cell therapy, and other cutting edge treatments that scientists are playing around with today. This is a book that everyone should read, not only for all the points I've mentioned, but also for the beautiful writing. Jonathan Weiner is perhaps the most eloquent non-fiction writer out there today, right up there with John McPhee and Annie Dillard. Add onto his literariness the great page-turning suspense of Michael Crichton, and you've got this winner.

11 of 13 people found the following review helpful:

5.0 out of 5 stars A Family Up Against a Horrible Disease, May 11, 2004

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R. Hardy "Rob Hardy" (Columbus, Mississippi USA) - See all my reviews
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This review is from: His Brother's Keeper: A Story from the Edge of Medicine (Hardcover)

Stephen Heywood was a carpenter, and a good one. His father was a director of an engineering lab, his mother a retired psychotherapist, one brother an aspiring Hollywood producer, and another brother an MIT graduate mechanical engineer. Stephen, therefore, was sort of a black sheep in a family of achievers. He had as a suitable project the restoration of a cottage in Palo Alto, where he was working in 1997. It was there that he put the key into a door, and it was stuck. He could not turn it, even though the lock was new, top-of-the-line, and previously working well. This simple problem puts into motion the events described in _His Brother's Keeper: A Story from the Edge of Medicine_ (Ecco) by Jonathan Weiner. Weiner has previously given wonderful accounts of current evaluations of the evolution of Darwin's finches and of the genetics of fruit flies, but here he has given a deeply human portrait of the effect of illness on one family. The problem is not the lock; Stephen dismantled it and it was in full working order. Then he discovered that he could turn the key if he used his other hand. The problem was within his own body.

It was Stephen's first signs of amyotrophic lateral sclerosis (ALS), often called Lou Gehrig's disease. ALS inactivates neurons which control the muscles. The muscles atrophy and eventually even those involved in breathing cannot function, so that the victim dies of suffocation. Death comes almost always within five years after the condition has been diagnosed, and most patients die within two years. Stephen's engineer brother, Jamie, had tackled many projects, many problems, and had overcome them all. Surely finding a cure for Stephen's condition was just one more problem, essentially an engineering problem. It didn't matter that he was a mechanical, not chemical or biochemical or genetic, engineer. Jamie immersed himself in ALS research, first on the Internet, of course, and then in the medical journals. He found that one factor getting the blame is the overproduction of the neurotransmitter glutamate, which kills off spinal nerves. He set up a foundation to power his efforts, and eventually a biotech company. He got contributions from his family, and his wife belly-danced to make money at benefit performances. The odds against success were overwhelming, while Stephen lost one function after another, providing the tension within the story.

It all should have turned out differently. It would be unfair to give away the specific ending of the book, but suffice it to say that Stephen at the end is heroically, calmly beating the odds in his own way, helped by a wife who is devoted to him and a family that cares for its lovable black sheep. He refuses to see himself as victim or hero, just prey to a "normal accident." He also does not mythologize Jamie's race for a cure, seeing it as a hunt for a "normal miracle." Jamie remains enthusiastic; it is clear that his own hubris in his project is only his individual partaking of the larger over-optimism of molecular medicine. The latter is obvious in the death of an eighteen-year-old in a clinical trial of gene therapy in 1999; as a result, the plans for gene therapy for Stephen had to be abandoned. Weiner himself shows that he has been disillusioned by medical hype. This is an often inspiring story of good intentions and hope, however; it isn't the fault of any of the people described herein, including the author, that hope is sometimes misplaced.

7 of 8 people found the following review helpful:

5.0 out of 5 stars I Won't Forget the Heywoods Anytime Soon, June 1, 2004

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bookcat1962 "bookcat1962" (USA) - See all my reviews

This review is from: His Brother's Keeper: A Story from the Edge of Medicine (Hardcover)

I just finished "His Brother's Keeper" and will not forget this family for a long time. This book is incredibly sad but it also shows the hope of a family trying to reverse the course of a terrible illness. It is a story of the turn of a new century, when there was hope in gene therapy, in internet start ups, in Dolly the sheep.

The characterization within this book was excellent. The people who stuck out for me were Jamie, his brother Stephen and Stephen's wife Wendy. Jamie is the epitome of the driven man. His energy pops off the pages. Stephen is the searcher, the world traveler and, as Weiner writes, the Gen-X "slacker." That is, until Stephen finds his calling in carpentry and is just as driven as his mechanical engineer/entrepreneur brother.

Wendy is introduced later in the narrative. She is by her boyfriend's (eventually husband's) side as he goes through the progression of the disease. Whether arguing with a neighbor or keeping a visage of hope for her husband, she is a valuable presence in Stephen's life and in this book.

The author Jonathan Weiner is part of the story as well. He is captivated by the Heywoods and readily acknowledges it. His own mother is ill, and, as a "science writer," he has both knowledge and hope for the promise of new therapies and cures. Weiner writes of medicine, of the Heywood brothers, wives and parents, of September eleventh (briefly), and primarily, of hope. Hope and family are at the heart of this sad story of the new millennium.