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

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Press:Ecco (HarperCollins) Ecco; 1 edition (March 16, 2004)
Author Name:Weiner, Jonathan


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?"

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.

From Booklist

*Starred Review* Not a baseball star like Lou Gehrig. 
Just an ordinary carpenter afflicted with the same terrible degenerative disease that struck down the acclaimed ballplayer.
But in recounting this carpenter's descent into neuromuscular paralysis and his devoted brother's heroic fight to stop that descent, Weiner allows his readers to visit the very frontiers of medical science--and to contemplate the oldest of human loyalties.
Two intertwined transformations propel the narrative: the doomed sufferer's pathetic metamorphosis from robust and versatile handyman into wheelchair-bound paraplegic and the brother's improbable emergence as a relentless explorer of genetic science deploying the redirected skills of a mechanical engineer.
The linked chronicles of personal change teach a great deal about the grim progress of an ugly disease and even more about the promising yet still risky therapies now tantalizing--often frustrating--desperate patients and hopeful experimenters.
His sympathy for both brothers deepened by his own mother's downward spiral into nerve death, Weiner delivers a denouement at once unsentimentally candid and humanely affirmative.
A poignant and probing look at both the potential and the limitations of pioneering medicine.
Bryce ChristensenCopyright © American Library Association.
All rights reserved

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.

From The Washington Post

Jamie and Stephen Heywood are companions and cocky, affectionate rivals, in the familiar way of brothers born two years apart. 
In their brainy, close-knit and taciturn New England family, play is the language of love.
As boys, they sneak out together to ride the rapids on a creek during a storm or to play night laser tag in the woods.
As young men living in different cities, they spar online in computer games.
At every family gathering, they arm-wrestle.
Oddly, it is Jamie, the older one, who takes these duels seriously and cares about the outcome.
So it is Jamie who crows with glee one summer day when, to his surprise, he forces his carpenter brother's mighty right arm to the table.
Neither man realizes that Stephen's defeat is no fluke, but the first indication of a dreaded ailment: amyotrophic lateral sclerosis or ALS, also called Lou Gehrig's disease.
Within two years, Stephen will be diagnosed with early signs of a nerve-destroying paralysis that slowly robs its victims of strength until they can no longer talk, then can no longer breathe.
Jonathan Weiner is a Pulitzer prize-winning science writer whose previous subjects have been biologists intellectually obsessed with finches and fruit flies.
Jamie Heywood, the central figure in Weiner's superb new book, is also obsessed -- but what drives Jamie is love and a "maddening hope." When his younger brother develops ALS, the dream of engineering and delivering a cure to save Stephen becomes the organizing principle of Jamie's life.
The hubris of his quest is all the more breathtaking because he is not a scientist, but a charismatic young entrepreneur watching from the sidelines at an especially optimistic moment in scientific history.
Even as weakness creeps up and down Stephen's limbs, possible genetic fixes are being cobbled together and readied for testing in dozens of diseases.
Jamie asks, Why not for Stephen? If Stephen Heywood had fallen ill a decade earlier, reputable doctors and researchers would have summarily dismissed Jamie's scheme to devise an experimental gene therapy for ALS and try it on his brother.
But in the late 1990s, several highly regarded scientists and physicians listen and agree to become acrobats in his high-wire act.
In His Brother's Keeper, the biology of nerve cells and the dawning history of gene therapy play supporting roles in a plot as finely crafted as that of the best novels.
Weiner uses the Heywoods' story to illuminate the unexpected ways in which a serious illness reveals character and shifts the balance within a family.
Stephen Heywood is both brave and enigmatic: The center of a storm, he manages to downplay the terrifying reality of his disease while staying solidly connected with those he loves.
The Heywood parents, John and Peggy, lend financial and emotional support to Jamie's headlong campaign but seem to remain clear-eyed, without false hopes.
Jamie's wife, Melinda, and Stephen's fiancée, Wendy, give voice, aloud and in their journal scribblings, to the fear, guilt and anger of which the Heywoods themselves never speak.
But it is Jamie who fascinates.
He draws the reader into Weiner's tale the way he drew scientists onto his team -- and drew Weiner himself into his family and into his obsession.
Jamie's brilliance and energy are at first dazzling, then unsettling.
The longer Weiner follows the story, the more ambiguous Jamie's motives appear, and the more bizarre seems his wish to inject a virtually untested treatment into his brother's nervous system.
Meanwhile, the nation's early optimism about gene therapy is dashed by the death of a teenager in a medical experiment in Philadelphia, the same city where Jamie's scientific collaborators have been busily engineering genes to treat Stephen's ALS.
Weiner has a master's eye for the telling detail and a spare, often poetic style.
His terse recounting of the seminal advances and setbacks in genetic engineering in the late 1990s provides the scientific counterpoint to the Heywood family drama.
His Brother's Keeper could be considered the third volume of a trilogy that began with The Beak of the Finch, Weiner's chronicle of biologists watching bird evolution in the Galapagos, and continued with Time, Love, Memory, his probing of the genetic basis of behavior.
In this book he brings the biology home, asking whether the revolution in our understanding of genetics can and should be harnessed at will to save a brother or to create a child.
The larger question is whether we will be able to use what we are learning to make us more fully human, or whether our new knowledge and power will obstruct that journey.
"I wanted what I had seen and felt when I was small to have some connection with what I would see, learn and know in the end," Weiner writes.
"I thought the whole human race wanted something like that.
The beginning, middle and end should make one unbroken story.
The stem should lead up to the rim of a cup from which we can drink and still be ourselves." Reviewed by Susan OkieCopyright 2004, The Washington Post Co.
All Rights Reserved.


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Comment List (Total:13)

  •     I really enjoyed this book. I felt that it was written well and was honest. It gives two very important perspectives of the difficulties of fatal diseases--from the patient and...
  •     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.
  •     Poor writing and a dull read. If this isn't absolutely necessary for you, don't buy it. There are better books about ALS out there.
  •     This book means different things to different people. If you're affected in any way by ALS, it's that hand to hold that reminds you that while the disease is horrible, it will be...
  •     I read a review of this book and instantly wanted to read it. It is a heartbreaking story of an amazing family and the sacrifices one brother makes for another.
  •     "His Brother's Keeper" is the author's extremely personal book and each reader's reaction is correspondingly likely to be uniquely (and probably intensely) personal.
  •     The book itself is compelling as it glides you through the journey Jaime Heywood (the protagonist) takes in order to engineer a cure for his brother who has been diagnosed with...
  •     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.
  •     I read this book solely based on the author's fantastic first book "time love and memory", but found this book to be utterly boring.
  •     A couple of years ago I had a cancer scare. There was a growth in my kidney that the doctors said was either a dense cyst or a tumor.
  •     great book! nice deliver!
  •     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.
  •     Just as riveting as Time, Love, Memory and The Beak of the Finch and more personal, more riveting.

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