Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health
336
Tyranny of the Gene: Personalized Medicine and Its Threat to Public Health
336Hardcover
-
PICK UP IN STORECheck Availability at Nearby Stores
Available within 2 business hours
Related collections and offers
Overview
The United States is embarking on a medical revolution. Supporters of personalized, or precision, medicine—the tailoring of health care to our genomes—have promised to usher in a new era of miracle cures. Advocates of this gene-guided health-care practice foresee a future where skyrocketing costs can be curbed by customization and unjust disparities are vanquished by biomedical breakthroughs. Progress, however, has come slowly, and with a price too high for the average citizen.
In Tyranny of the Gene, James Tabery exposes the origin story of personalized medicine—essentially a marketing idea dreamed up by pharmaceutical executives—and traces its path from the Human Genome Project to the present, revealing how politicians, influential federal scientists, biotech companies, and drug giants all rallied behind the genetic hype. The result is a medical revolution that privileges the few at the expense of health care that benefits us all.
Now American health care, driven by the commercialization of biomedical research, is shifting focus away from the study of the social and environmental determinants of health, such as access to fresh and nutritious food, exposure to toxic chemicals, and stress caused by financial insecurity. Instead, it is increasingly investing in “miracle pills” for leukemia that would bankrupt most users, genetic studies of minoritized populations that ignore structural racism and walk dangerously close to eugenic conclusions, and oncology centers that advertise the perfect gene-drug match, igniting a patient’s hope, and often dashing it later.Tyranny of the Gene sounds a warning cry about the current trajectory of health care and charts a path to a more equitable alternative.
Product Details
| ISBN-13: | 9780525658207 |
|---|---|
| Publisher: | Knopf Doubleday Publishing Group |
| Publication date: | 08/15/2023 |
| Pages: | 336 |
| Sales rank: | 342,303 |
| Product dimensions: | 6.60(w) x 9.20(h) x 1.30(d) |
About the Author
Read an Excerpt
1
A Tale of Two Revolutions
Olga Owens Huckins and her husband, Stuart, had cultivated a two-acre oasis about thirty-five miles southeast of Boston on the Powder Point peninsula of Duxbury, Massachusetts. They’d left a large portion of it to wilderness, where reeds grew thick in freshwater ponds and mature cedars and oaks abounded. Just off the coast of Duxbury Bay, their refuge was a perfect spot for migrating birds to feed, rest, and nest. Olga and Stuart were bird lovers and welcomed birders onto their property to seek out the night herons and spotted sandpipers, the American goldfinches and Carolina wrens.
But on a summer day in 1957, Olga looked out at her beloved bird sanctuary in horror. The ground was filled with the corpses of birds, their beaks open but silent and their tiny claws scrunched up to their chests in anguish. Days earlier, a crop duster hired by the State of Massachusetts to spray a pesticide aimed at exterminating mosquitoes had crisscrossed the Huckinses’ sanctuary. The chemical, DDT (dichlorodiphenyltrichloroethane), killed indiscriminately. The couple found seven songbirds dead almost immediately. The next day three more lay lifeless around their birdbath. The day after that they watched a robin drop off a branch. The bees and grasshoppers were also killed off. Ironically, it seemed as if only the mosquitoes survived.
When, in January 1958, Olga read in The Boston Herald assurances from a representative of the State of Massachusetts spraying program that the pesticide they were continuing to release was safe and effective, she wrote a letter to the paper describing the devastation to her property and the wildlife that lived on it, as well as the deep betrayal she felt. “They were birds that lived close to us, trusted us, and built their nests in our trees year after year.” No one, she said, could witness the impact of that pesticide and deem it harmless to all but mosquitoes. Olga also sent a copy of her letter to a friend who had worked for the U.S. Fish and Wildlife Service. Was there anyone who could help halt the spraying of DDT?
That friend was Rachel Carson. By 1958, Carson was well aware of the threat posed by DDT. In fact, in 1945, when she was working for the Fish and Wildlife Service, she’d reached out to Reader’s Digest to see if it would be interested in a story about the DDT testing that the service was conducting. DDT was hailed as a miracle of modern science, used widely by the American military during World War II, sprayed across islands in the Pacific to kill malaria-carrying mosquitoes, and doused on soldiers in Europe to kill typhus-carrying lice. After the war, DDT came to represent the Cold War mentality of humans triumphing over nature. In contrast to previous synthetic pesticides that tended to work only on certain pests, DDT promised to eradicate all sorts of vermin; what’s more, the chemical compound was cheap and stayed in soil and on plants for extended periods, so it continued to repel insects long after the initial administration. When fire ants invaded farms across the South, the chemicals industry and the U.S. Department of Agriculture teamed up to respond with a campaign of widespread DDT spraying. Throughout the 1950s, crop dusters across the United States coated farms and marshes with a film of DDT, all in the name of boosting crop yield and exterminating pestilence.
In 1945, the Reader’s Digest editors weren’t interested in an essay from some unknown employee of the Fish and Wildlife Service. But by 1958 Carson had left the service and turned to working as a full-time writer, counting a trio of best-selling books about the wonders and ecology of oceans to her credit. She continued tracking the agricultural use and environmental impact of DDT, however, collecting technical reports and scientific publications on the topic. Carson began communicating with toxicologists, wildlife biologists, and chemists; she also joined forces with citizens like Huckins who were sounding the alarm about what pesticides were doing to their local communities. The research that Carson reviewed indicated that DDT accumulated in organisms that encountered it, and then grew more and more concentrated as it rose up the food chain. Entire populations of birds, fish, and small mammals were being wiped out by the pesticide. At the same time, insects repeatedly exposed to the chemical ended up gradually developing resistance, necessitating even more spraying.
In May 1958, just months after Huckins’s letter reached her, Carson signed a book contract. Four years later,
Silent Spring appeared. In it, Carson warned that pesticides like DDT were becoming deadlier and deadlier and ecosystems were being decimated and thrown out of balance. Carson didn’t call for the complete ban of all synthetic pesticides, recognizing their value. But she did warn against the indiscriminate use of them given the dearth of information about the wider ecological and health impacts of sustained exposure to chemicals never before seen on Earth. The New Yorker serialized three chapters from Carson’s book throughout June 1962, helping make Silent Spring an immediate sensation when it arrived in bookstores that September. Carson thanked Huckins for her 1958 letter in the acknowledgments, and the book’s famed title was a nod to her as well, a reference to her songbirds’ sad silence.
The chemicals industry, sensing a genuine threat, pounced. Because readers were given a peek into Silent Spring through The New Yorker excerpts, the chemical companies had prepared an all-out assault on Carson’s book by the time it reached bookstores. Representatives from Monsanto Chemical Company and Dow Chemical Company accused Carson of being anti-science, anti-technology, and anti-progress. They warned of a planet overrun by insects and human populations threatened with starvation, epidemics, and misery. Carson’s critics, almost entirely men, questioned her scientific credentials and routinely used gendered language to discredit her concerns. Her overtly “emotional” and “sentimental” diagnoses, they chided, were little more than “high-pitched” feminine hysteria and not at all conducive to the cold, hard fact-finding of proper science. Carson was limited in responding to her critics because she was battling breast cancer. She died in April 1964, less than two years after Silent Spring was published.
Carson’s book and the widespread public interest in humanity’s impact on the environment lived on. That attention and back-to-back ecological disasters in 1969 galvanized the modern American environmental movement. First was the Santa Barbara oil spill, when nearly 100,000 barrels of oil polluted the pristine Santa Barbara Channel off California and killed thousands of seabirds, dolphins, and sea lions. Just months later, a railcar passing through Cleveland threw a spark into the Cuyahoga River that landed on an oil slick, igniting the river in flames. Both of those events drew sustained national media attention, and it put pressure on politicians to act. Congressman Pete McCloskey of California and Senator Gaylord Nelson from Wisconsin helped organize the first Earth Day on April 22, 1970, and later that year President Richard Nixon ordered the creation of the Environmental Protection Agency. Congress, over the next three years, followed with the Clean Air Act, the Clean Water Act, and the Endangered Species Act. In 1972, the EPA banned the use of DDT in the United States.
Rachel Carson is remembered by history for launching the environmental movement, warning of the dangers to come if Earth isn’t protected from human activity. But Silent Spring also warned of the threats that humans posed to themselves. Pesticides like DDT, Carson explained, were in rivers and groundwater, in soil and plants, in the bodies of fish and domesticated animals, and therefore were “now stored in the bodies of the vast majority of human beings, regardless of age. They occur in the mother’s milk, and they probably occur in the tissues of the unborn child.” Once inside the body, those chemicals disrupted the immune system, altered metabolism, attacked the nervous system, and initiated cancerous cell growth. For millennia, public health was about sanitation and protecting communities from infectious diseases. Public health success stories involved keeping deadly microbes out of the human body, be it by separating sewage from drinking water or by quarantining the sick from the healthy. After Silent Spring, it became clear that public health needed to include protection from products that humans were producing to control nature.
The banning of DDT by no means solved the nation’s environmental health problems. Chemical companies continued to produce new herbicides, fungicides, and insecticides. The exhaust from leaded gasoline pervaded the air that humans breathed. Toxic waste buried in the 1940s and 1950s was leaching up into playgrounds in the 1970s. Asbestos and lead paint surrounded people in the homes where they lived. These substances were associated with a range of alarming health outcomes, including miscarriages, birth defects, neurodevelopmental delays, respiratory disorders, and blood cancers.
Research in the 1980s and 1990s made clear that the burdens of exposure to these harmful environments were distributed neither randomly nor equally. In 1982, Black Americans living in Warren County, North Carolina, protested when the state announced its intention to dump soil contaminated with toxic polychlorinated biphenyls in their community, one of the very few primarily Black counties in the state at the time. The water table in that rural region sat just ten feet belowground, so the residents reasonably feared that their supply of drinking water would be poisoned by carcinogenic runoff. Citizens, religious leaders, local politicians, and members of the NAACP fought back. Some lay down in the road, nonviolently preventing the trucks carrying the tainted soil from proceeding. Others linked arms and chanted, “They ain’t gonna stop us now!” Marchers carried signs with “PCB” crossed out. Officers in riot helmets scooped up hundreds of protesters and carried them to a bus where they were transported to jail, and the state dumped the hazardous waste in Warren County just the same. But the massive civil disobedience drew national attention to a glaring prejudice. Subsequent research revealed that low-income communities of color with little in the way of political power were routinely prioritized for hosting industrial plants, oil refineries, factories, and landfills; the placement of those sources of pollution in the communities made the environments less healthy for the citizens and also less financially valuable, which in turn made the communities more likely to be candidates for hosting future toxic materials. The toxic feedback loop became recognized as a particularly harmful form of injustice, resulting from “environmental racism.”
Around the same time, pediatricians started warning of the undue burden of toxic exposure felt by America’s children. The EPA’s system for testing and regulating safe levels of pesticides and other harmful chemicals was based on what the average person encountered and could tolerate. But pediatricians cautioned that exposure to even trace amounts of these substances could have vastly different impacts on the health of infants and young children, compared with adults, affecting their immune and endocrine systems, the development of their reproductive organs, and their neurocognitive function. Unfortunately, there was very little data on how sustained exposure to things like pesticides, noxious air, unclean water, and hazardous waste impacted children as they grew.
In 2000, politicians in Washington, D.C., decided it was time to gather that data. Congress passed the Children’s Health Act, which called for a nationwide study of America’s children that investigated the environmental impacts on their health. The study, by congressional mandate, had to be large and diverse enough to address racial health disparities; it had to last long enough that the children could be monitored until they were adults; and it had to be complex enough to consider all manner of environmental features—chemical, biological, physical, and psychosocial. On October 17, 2000, President Bill Clinton signed the Children’s Health Act into law, officially calling for the National Children’s Study.
In 1957, the same year that Olga Huckins discovered her dead songbirds in Massachusetts, a very different health revolution began taking shape on the other side of the United States when Arno Motulsky made the case for a new science of “genetically conditioned drug reactions.” Motulsky, a medical geneticist at the University of Washington in Seattle, had taken a very circuitous route to reach that position. He fled Nazi Germany with his Jewish family in 1939 and made it to the Miami coast aboard the St. Louis with nine hundred other Jewish refugees before the U.S. government denied the asylum seekers access to the country and forced the ship to return to Europe. Motulsky and his family entered Belgium shortly before the Germans invaded it. He was separated from his parents and siblings and spent the next year in camps across France, barely avoiding being sent to Auschwitz. He finally managed to escape Europe through Spain and Portugal to reach his father living in Chicago, where the rest of the family joined them several years later. Motulsky served in World War II and the Korean War, eventually earning his medical degree and learning genetics at Yale. In 1953, he began working at the University of Washington and, in 1957, set up the Division of Medical Genetics there, one of the first in the country.
That same year Motulsky published a paper in the prestigious Journal of the American Medical Association. In it, he pointed to a growing number of cases revealing peculiar “drug idiosyncrasies.” Motulsky’s prime example was derived from research conducted at Illinois’s Stateville Penitentiary a decade earlier. Beginning in the 1940s, Alf Alving, a nephrologist with the University of Chicago, infected prisoners with malaria and then administered different synthetic antimalarial drugs to them to see what was most effective, part of a larger war effort aimed at protecting U.S. soldiers fighting overseas. Such research would never be approved today, but it was hailed at the time. In 1945, Life magazine published an essay about Alving’s research with photographs of prisoners being bitten by mosquitoes and then suffering in bed with fevers and chills; the opening sentence praised the experiments where “men who have been imprisoned as enemies of society are now helping science fight another enemy of society.”
The most promising antimalarial to come out of Alving’s studies was primaquine. It was to be taken daily over the course of fourteen days and had relatively few side effects for the vast majority of people who took it. There was an exception, though. About one in ten Black men who took the drug developed hemolytic anemia, a dangerous condition during which red blood cells break down faster than the body can create new ones, leading to fever, weakness, dizziness, increased heart rate, confusion, and chest pain. Starting in the 1950s, Alving wanted to figure out why primaquine was unsafe for certain people and whether there was a safe dose that everyone could tolerate. In the first experiment, he and his team gave thirty milligrams of primaquine to 110 Black inmates; 5 of them developed anemia so severe that the scientists had to end the study prematurely for fear of killing the men. That was just the beginning of the ordeal for those 5 prisoners. Once they recovered, which took about two to three weeks, they were then put on a fourteen-day regimen of fifteen milligrams of primaquine to evaluate the impact of the halved dosage; 4 developed anemia, but it was milder.
Related Subjects
Customer Reviews
Explore More Items
