Americans have become the victims of misinformation about stem cell research. Over the last few years, the stem cell debate has been intensely political, religious, and confusing to many people. Now, Eve Herold explains what this science is all about, who is for and against it, and why it must go forward. She pulls together fascinating stories to highlight every aspect of this multifaceted field. She exposes the politics of stem cell research and demonstrates how the outcome of the debate could ultimately affect all of us. Packed with real-life stories of the people caught up in this groundbreaking struggle, Stem Cell Wars cuts through the noise and sets the standard for future debate.
Americans have become the victims of misinformation about stem cell research. Over the last few years, the stem cell debate has been intensely political, religious, and confusing to many people. Now, Eve Herold explains what this science is all about, who is for and against it, and why it must go forward. She pulls together fascinating stories to highlight every aspect of this multifaceted field. She exposes the politics of stem cell research and demonstrates how the outcome of the debate could ultimately affect all of us. Packed with real-life stories of the people caught up in this groundbreaking struggle, Stem Cell Wars cuts through the noise and sets the standard for future debate.
Stem Cell Wars: Inside Stories from the Frontlines
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Stem Cell Wars: Inside Stories from the Frontlines
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Overview
Americans have become the victims of misinformation about stem cell research. Over the last few years, the stem cell debate has been intensely political, religious, and confusing to many people. Now, Eve Herold explains what this science is all about, who is for and against it, and why it must go forward. She pulls together fascinating stories to highlight every aspect of this multifaceted field. She exposes the politics of stem cell research and demonstrates how the outcome of the debate could ultimately affect all of us. Packed with real-life stories of the people caught up in this groundbreaking struggle, Stem Cell Wars cuts through the noise and sets the standard for future debate.
Product Details
| ISBN-13: | 9781466893351 |
|---|---|
| Publisher: | St. Martin's Publishing Group |
| Publication date: | 04/07/2015 |
| Sold by: | Macmillan |
| Format: | eBook |
| Pages: | 256 |
| File size: | 355 KB |
About the Author
Eve Herold is Director of Public Policy Research and Education at the Genetics Policy Institute. A science and health writer, she has been featured in The Boston Globe, The Wall Street Journal, Prevention, The Kiplinger Report, and The Washington Post and on MSNBC, NPR, and CNN. She lives in Burke, Virginia.
EVE HEROLD is an award-winning science writer and consultant in the scientific and medical nonprofit space. A longtime communications and policy executive for scientific organizations, she currently serves as Director of Policy Research and Education for the Healthspan Action Coalition. She has written extensively about issues at the crossroads of science and society, including stem cell research and regenerative medicine, aging and longevity, medical implants, transhumanism, robotics and AI and bioethical issues in leading-edge medicine. Previous books include Stem Cell Wars and Beyond Human, and her work has appeared in The Wall Street Journal, Vice, The Washington Post and The Boston Globe, among others. She’s a frequent contributor to the online science magazine, Leaps, and is the recipient of the 2019 Arlene Eisenberg Award from the American Society of Journalists and Authors.
Read an Excerpt
Stem Cell Wars
Inside Stories from the Frontlines
By Eve Herold
Palgrave Macmillan
Copyright © 2006 Eve HeroldAll rights reserved.
ISBN: 978-1-4668-9335-1
CHAPTER 1
the field of battle
Three passions, simple but overwhelmingly strong, have governed my life: the longing for love, the search for knowledge, and unbearable pity for the suffering of mankind.
—Bertrand Russell
Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing.
—Voltaire
Frank Cocozzelli's life should have turned out differently. Born in Brooklyn, New York to devout Italian Catholic parents, Frank was an exceptionally bright boy. Unlike most of the boys he went to school with, he was more interested in intellectual heavy lifting than in sports. Graduating in 1982 from Queens College, he continued on and became part of the first class to attend Queens' new law school, pursuing his goal of becoming a lawyer.
While in law school, Frank decided to try to overcome what he saw as his lack of athletic ability by joining a gym, where he started lifting weights. The weight-lifting was challenging at first, but by steadily applying himself, he was soon bench-pressing 140 to 150 pounds. Then, one day, he noticed that instead of gaining strength in his upper body, he was actually losing it. Inexplicably, week after week, he could lift less and less weight. It made no sense for a young guy in his twenties to grow weaker instead of stronger.
Around this time, he decided to make a little spending money by taking a part-time job as a "gofer" for an attorney in Queens. One of his duties was to walk to the bank, which was about half a mile away, and make deposits for the law firm. He had no trouble getting to the bank, but on his way back to the office, he would suddenly be seized by severe pain in his legs. It seemed to be brought on by exertion. He was also developing a noticeable limp. Concerned and completely baffled by this new development, Frank made an appointment to see a neurologist in Long Island who happened to be treating his grandfather for Parkinson's disease.
The neurologist conducted an initial examination, and told him that he thought the problem was probably a pinched nerve, caused by a dislocated vertebra, a relatively common condition that can be corrected by surgery. Frank went home relieved, but a few days later, the results of one of the tests came back, and the news wasn't just bad, it was devastating.
The test that rocked Frank's world is called an electromyography. It involves placing a needle into the skin at the top of the thigh, and another one at the base of the foot, then shooting an electric current through the muscles to see how they respond to stimulation. And Frank's muscles showed signs not just of weakness, but of pathological atrophy. When another test came back showing abnormal levels of an enzyme called creatinine kinase in his blood, the worst was confirmed: The source of Frank's problems was muscular dystrophy.
Muscular dystrophy, which is passed down on one of the mother's X chromosomes, occasionally strikes females but shows up far more often in males. It's more common than one might think—approximately 30 out of every 100,000 male babies are born with the genetic defect for some form of muscular dystrophy. Some of them are lucky enough to develop only a mild form of the disease and don't become wheelchair-bound. But most do, and those who have the most common forms of the disease—Duchenne's and Becker's muscular dystrophies—suffer progressive muscular atrophy so severe that they often die before the age of 20. Frank's variant of the disease usually shows up in early adulthood.
The root of the progressive muscle weakness is that the muscles are unable to make a key protein called dystrophin. Because this protein is critical for muscle cells to maintain their structure, the muscle fibers first enlarge, then progressively die off and are replaced by fat and other useless tissues. People with muscular dystrophy grow weaker and weaker, gradually becoming so weak that they can't move. At some point, they are usually confined to a wheelchair, then bedridden, in a slow descent into greater degrees of helplessness. All the while their minds remain intact. Like the victims of amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, they become prisoners in a body that needs 24-hour-a-day care and help with every basic function. Along the way, because of the patient's inability to move, he develops painful muscle contractions and severe osteoporosis, which leads to brittle, easily fractured bones. Pneumonia and other infections can easily overwhelm his compromised immune system, and these are often the immediate cause of death. In very aggressive forms of muscular dystrophy, the heart muscle weakens until it can no longer pump.
Doctors are helpless in the face of this devastating condition. They can prescribe physical therapy to try to slow the degeneration of muscles and to ease some of the pain caused by permanent muscle contraction. But there's no way to halt the disease, which runs its inexorable course and cuts the victim's life span short by several decades. One of the most difficult things for patients and their loved ones to cope with is that doctors can't even tell them how long they will live or at what level of disability. Every case is individualized, and every morning that a muscular dystrophy patient wakes up is fraught with uncertainty about what tiny but infinitely precious ability will be lost that day.
Today the sheer force of Frank's mind belies the weakness of his body. His memory is encyclopedic, enabling him to rattle off names and dates and long-ago events with a fluency that is nothing short of amazing. He is considered one of the "lucky ones," having one of the rarer forms of the disease, a variation called limb-girdle muscular dystrophy, or LGMD. He has made it to the age of 47, although he has spent the last few of those years in a wheelchair. He is losing more and more of the movement in his arms and requires around-the-clock assistance, which is provided by his wife and his father.
"I have to be lifted in a sling to go to the bathroom," he says matter-of-factly. "It's very difficult for my wife and father to lift me. I can lift my arms a little, with help. And I can still feed myself, although I'm told it looks disgusting. I have to hunch over the plate and push the food up to my mouth, and it goes everywhere. People don't like to watch it." Frank is sensitive about eating in public, afraid that he might offend people in restaurants. When asked how he copes with the progression of his illness, he says, "I try not to think about what tomorrow brings." He focuses instead on fighting the small battles, of using what little movement he has left so that he can retain it as long as possible.
Frank would be the first to tell you he is not a victim. He married his college sweetheart, who knew about the muscular dystrophy, and together they had two children. He still practices law, and goes to his office in Garden City, New York, two or three times a week. He is also a stem cell research activist, and three years ago, he and a partner founded the Committee for the Advancement of Stem Cell Research, a political action group. A few years ago, he learned about the possibility of stem cell treatments curing muscular dystrophy.
In 1998, Frank traveled to Miami to see a new doctor, an expert on paralysis at the University of Miami. After years of being given no hope, this doctor explained to him how, if the research succeeded, treatments derived from embryonic stem cells could possibly replace dead muscle tissue by transplanting the precursors of normal muscle cells into his body. If the treatment worked, the stem cells would divide into healthy muscle cells able to make the dystrophin he needs to rebuild his body and recover his strength. "We're really hopeful about this one," the doctor told him. Although the research was at the very early stages, it was the first glimmer of hope Frank had been given in the 20 years since his diagnosis.
At the time, President Clinton was still in office, and, in light of the 1998 isolation of human embryonic stem cells, plus a string of incredible successes in animal studies, Clinton had put together a commission to review the existing federal policy of withholding funding for research using embryos. Rules that had been in effect since 1993 forbade the U.S. government from funding research that involved the destruction of human embryos, but evidence was mounting through animal studies that embryonic stem cells held extraordinary promise for the treatment of a huge range of diseases. "I'll never forget a certain day in 2000," Frank recalls. "My wife was dressing me for court, and we had The Today Show on. They said that Clinton was reversing the ban on embryonic stem cell research. I got so hopeful, it was all I could think about that day. I thought, 'Maybe this is it. Maybe there really is going to be a cure.'"
But Frank's hopes were not to be realized, at least not that year. The Clinton presidency was drawing to a close and the 2000 presidential race was on. Al Gore had clearly stated that he was in favor of allowing the National Institutes of Health to fund embryonic stem cell research, but candidate George W. Bush had already made public his opposition. Like countless other patients with otherwise incurable diseases, the days when the 2000 election was still undecided were an emotional roller coaster for Frank. Then, the Supreme Court made its decision in favor of Bush. "I'll never forget the night I heard their decision," Frank says. "I could still drive then, with an assistive device, and I was sitting in my car listening to the radio. They made the announcement, and I just sat in my car and cried."
One of the first actions that George Bush took after becoming president was to put the brakes on the Clinton proposal regarding embryonic stem cell research before it could be implemented. In the months that followed, crushing disappointment for people like Frank turned to anger. He was soon to realize that Bush's 2001 "compromise," to allow federal funding of research on existing embryonic stem cell lines (or batches of cells derived from a single embryo), was a swindle for those who were waiting for cures. That realization, however, coalesced over a matter of weeks, when it was discovered that many of the cell lines that the president said were approved for federal funding hadn't been properly characterized or had died. Others turned out not to be embryonic stem cells at all, while others were located in countries that forbid the export of biological materials, such as India. It became clear that of the 64 cell lines initially claimed by President Bush, only 22 were actually both viable and available.
Even as some journalists were lauding the president for "opening the door" to stem cell research, scientists and patients were gradually learning the true nature of the federal limitations. Those limitations meant that U.S. government support for embryonic stem cell research was little more than a token. What the administration had done was shore up a massive dam against funding for embryonic stem cell research, while allowing a tiny trickle of research dollars to leak through. By the time scientists, patients, and advocates realized the true scope of the decision, President Bush had already scored a major public relations victory. In the four years since that decision was announced, Bush has said repeatedly that he will not allow any loosening of the federal restrictions on embryonic stem cell research.
Since 2001, Frank's frustration with the Bush administration has only intensified. He feels especially angry that Bush and his evangelical constituents seem to imply that being anti-embryonic stem cell research is the only legitimate religious view. Still a devoutly religious Catholic himself, he decries the fact that President Bush "... ignores the pro-research views of most American Catholics," obliging instead the ultra-conservative "Opus Dei" segment of Catholics, represented by politicians such as senators Sam Brownback (R-KS) and Rick Santorum (R-PA). "Furthermore," he notes, "on human embryonic stem cell research, he has selectively adopted the Vatican's position, but he chooses to ignore the pope in his opposition to the Iraq war, a situation that just raises his frustration level even higher."
As a random victim of illness, Frank Cocozzelli is far from alone. There are millions of Americans like him who search desperately for the help that, all too often, medicine cannot give them. Many diseases are part of the cruel randomness of the genetic lottery. Disease-related genetic mutations can lie silent for decades, until we reach a certain age or experience some environmental trigger that sets the disease process into motion. Others are evident from birth.
In late 2004, I got a phone call from the grandfather of a newborn baby girl. I'll call him Alan. Alan had been up, around the clock, for days, ever since his granddaughter was born two weeks previously. He had been searching the Internet desperately for some type of therapy that might help her. He found the website of the Stem Cell Research Foundation and called our toll-free number.
He told me that his granddaughter was a beautiful baby who looked normal in every way, but she was born with a condition called triple X syndrome. This meant that instead of having two X chromosomes, which is normal for females, her cells had three. Strangely enough, babies born with this condition develop normally in every way, with the tragic exception of their brains, which are subject to devastating seizures. I could hear exhaustion, fear, hope, and urgency in his voice as he described how this baby's tiny body was being racked with 15 to 20 violent seizures a day. "She will seem fine one minute, and then her eyes roll back and she just curls up," he said. Even worse, the doctor had told the shocked and distraught family that the electrochemical haywire searing through her brain every time she had one of these seizures was rapidly destroying her hope of a normal life.
"Every seizure she has is doing more damage to her brain," Alan said. "The doctor said what it's doing to her brain is like a computer shutting down 15 to 20 times a day. After a while it fries the circuit. If we could do something now to stop the seizures, she would be less damaged. But if this goes on, we've been told she won't develop beyond the mental age of a four-year-old, at the most." Like so many other people, Alan was hoping that stem cells would offer some kind of treatment, even if it was experimental. An experimental treatment, even with a totally uncertain outcome, still sounded better than what the doctors were telling this family.
I asked him what type of treatments the pediatricians were giving her. He said they were giving the tiny newborn some powerful anti-seizure medication that turned her into "a zombie." And still, the seizures returned. "It just comes over her, and it's violent. She struggles with it until she's exhausted. And then after a while she comes back," he said. "But I know that one day she's not going to come back."
It wasn't easy telling this desperate grandfather, who was ready to do anything humanly possible to help her, that his daughter's first baby was in a race against time that she had little to no chance of winning. If it were simply a matter of replacing damaged brain tissue with healthy new cells, then stem cell scientists are now closing in on a way to do that. But in addition to repairing damaged brain tissue, what this baby needed was a way to repair the genetic glitch in every cell of her body, and that is something that is an untold number years into the future. Many scientists believe that gene-based cures, perhaps combined with stem cells as the carriers of corrected genes, could someday cure syndromes like hers, but the best time to intervene in such a case would be long before birth, perhaps even at the embryonic stage.
What happened to Alan's granddaughter happened very early in her development, when the first cells with the genetic mistake copied themselves over and over as they divided and formed her body. But the only way to have detected the condition early enough to prevent it would have been if Alan's granddaughter had been conceived in vitro—in the lab—and if her embryo had been examined within a few days of its existence. And, problematically for some, scientists will never be able to diagnose and correct such mistakes without first doing research on human embryos.
(Continues...)
Excerpted from Stem Cell Wars by Eve Herold. Copyright © 2006 Eve Herold. Excerpted by permission of Palgrave Macmillan.
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Table of Contents
The Field of Battle * Two Worlds Colliding * The Science that Started a Revolution * Hijacked by the Politics of Abortion* The Battle for Hearts and Minds * Political Spin and the Weapons of Mass Distraction * Ethics and the Embryo * Health Care and Hypocrisy * Korea: Great Expectations * Korea: The Fall * Winning the Peace