Table of Contents
| Author's Note | xi |
| Part 1 | The Key in the Door | 1 |
| Part 2 | The Plan | 73 |
| Part 3 | The Construct | 147 |
| Part 4 | The Sign | 211 |
| Part 5 | The Sudden Fall | 291 |
| Acknowledgments | 355 |
Reading Group Guide
Introduction His Brother's Keeper is 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.
Questions for Discussion
- What is Stephen's role in his own story?
- Is Jamie a sympathetic character? Is there any moment in the book when your opinion of him changes?
- On p. 259, Stephen tells Jonathan Weiner that he is "hooked." Do you think that the Author's degree of investiture in the Heywood story is affected by his mother's neurological disorder? How so and to what extent?
- What are the parallels between Stephen's illness and that of Ponnie's?
- Was Jamie's race worthwhile in the end? Do you feel that he should have used his time differently? Do you agree with Stephen's choices?
- Do you think that Jonathan Weiner agrees with the experimental treatments being developed by Jamie and his team?
- Is Jamie really struggling to be "his brother's keeper" or is his quest a means of avoiding the truth of Stephen's ALS?
- Do you think that governmental agencies such as the FDA and the RAC should make greater exception in cases like Stephen's? Should regulatory criteria be the same in developing treatments for all diseases or do orphan diseases (like ALS and Lewy Body Dimentia) require a more lenient approach?
- His Brother's Keeper takes place during the last few years of the twentieth century. Has there been a change in public opinion regarding gene therapy since then? How do you feel about the fact that the Heywoods are a church going family, but also support gene therapy?
- Jamie finds himself torn between altruism and entrepreneurship. Would there have been a benefit to selling his idea to "big pharma"? Do you agree that his struggle to find treatment for Stephen would have been regarded differently if he had chosen to profit from the research?
About the Author
Jonathan Weiner's books have won the Pulitzer Prize, the National Book Critics Circle Award, the Los Angeles Times Book Prize, and many other honors. While working on His Brother's Keeper, he was writer-in-residence at Rockefeller University. He lives in Bucks County, Pennsylvania, with his wife and their two sons.
Read a Sample Chapter
His Brother's KeeperA Story from the Edge of Medicine
Chapter One
Portents
When they were boys, Jamie and Stephen Heywood loved to arm wrestle. They made it a ritual: first the right arm, then the left, then, if there was time, a wrestling match on the rug. Their rules of engagement were so complicated and so long unspoken that no one else ever learned the game. Even Jamie's best friend Duncan Moss did not know how to play. Duncan would take one step across the line on the rug. Then he would see the look on Jamie's face.
What? What did I do?
He did not know the rules.
The Heywoods lived in an old house on Mill Street in Newtonville, Massachusetts, a suburb of Boston. All three of the Heywood boys, Jamie, then Stephen, and then the youngest, Ben, were athletic dreamers, inventors of many rituals and adventures. The house on Mill Street is a block from a patch of woods and a pond. The brothers played football there in a corner field that belonged to a neighbor they called Aunt Betsy. Late at night when it rained hard, Jamie and Stephen snuck out with boogie boards. They hopped a fence to the creek, which got roaring in a good storm. Through the dark and the rain they rode the rapids into Bolough's Pond.
Their parents, Peggy and John Heywood, are well known in Newtonville. They love traditions, too. Each of them has served terms as Senior Warden of Grace Church, in Newton Corners. When their boys were young, they went back every summer to the dairy farm in South Dakota where Peggy had grown up. She had won a full scholarship to Radcliffe, in Cambridge, which is where she met John. Peggy worked as a therapist; she kept her practice small and devoted herself to the family.
Every seven years, they spent a year in England, where John was born and raised. John Heywood is a professor of mechanical engineering at the Massachusetts Institute of Technology, and an international authority on internal combustion engines. He is the son of a British coal engineer who turned to solar power early on, back when only the cranks were interested in what he had to say -- back when a maverick who worried about coal smoke, soot, and acid, and praised the power of the sun, was like a bolt from the future. John Heywood consults about energy efficiency for Ford in Detroit, Ferrari in Italy, Toyota in Japan. When he is at home, he runs MIT's Sloan Automotive Laboratory, to which he commutes from Mill Street on a bicycle.
Each summer in July or August, Peggy's side of the family gathered from across the country for a reunion at the beach town of Duck, near Kitty Hawk, in the Outer Banks of North Carolina. A few of the children on the beach were always honorary Heywoods, as Aunt Betsy was an honorary aunt. John and Peggy, Jamie, Stephen, and Ben each brought friends. The boys swam, sailed, surfed, and raced on the cold shining track the waves made for them. Every summer on one of their last days at Duck they played a game of basketball with their cousins and with strangers they roped in from up and down the beach, wickedly violent games that routinely sent a few Heywoods to the hospital.
As Jamie and Stephen got older, they kept arm wrestling, ritually. In their late teens and early twenties, when the two and a half years between them no longer mattered, they were perfectly matched. But Jamie became a mechanical engineer, like their father and his father in England. Jamie was intelligent and driven, and spent his days and nights working at a desk. Stephen became a carpenter, a hands-on man like their mother's father and brother in South Dakota. Stephen was intelligent, too, but he mistrusted desks and ambitions. He spent a few years swinging a hammer on a framing crew, and his right arm became unbeatable.
Late in July of 1997, when Jamie was thirty and Stephen was twenty-eight, they arm wrestled in the beach house their parents had rented that summer at Duck. Jamie was five feet, eleven and three-quarter inches tall, and he weighed one hundred and sixty-five pounds; Stephen was six-foot-three, two-twenty. Jamie was keeping himself in shape, but Stephen was building his first house that year, and his right bicep and tricep were very well-defined. In arm wrestling, there is always a moment when the winner knows he has won and the loser knows he has lost. The brothers were both surprised when they realized that for the first time in five years, Jamie would force Stephen's right arm down to the table.
Jamie whooped. I beat my carpenter brother. I'm the man! I'm the man!
Stephen won the next bout, which they fought, as always, lefthanded. That shut up Jamie.
Neither of them suspected that anything was wrong.
That year a team of scientists and veterinarians in Scotland announced the birth of a strange lamb, the identical twin of its mother. The news hung above the year like a comet. All around the world, the arrival of the lamb was received as a portent, like an earthquake, a fire, an eruption, a millennial battle won or lost. Something was out of whack in the order of the world and would have to be put right, if it could ever be put right -- or else turned to advantage, transformed into acts of healing as novel as the conception of that cloned lamb.
That was also the year the world's front pages carried the story of the death of Jeanne Louise Calment, from Arles, France. She helped inspire people to hope that in the new millennium, human beings might live as long as Methuselah. Jeanne Louise Calment was 122 years old. She remembered Vincent van Gogh.
Those who loved science and those who mistrusted it felt an almost supernatural touch of hope or dread that year, as if all our human rituals were about to change forever ...
His Brother's Keeper
A Story from the Edge of Medicine. Copyright © by Jonathan Weiner. Reprinted by permission of HarperCollins Publishers, Inc. All rights reserved. Available now wherever books are sold.
loading...