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Tyranny of the Gene : Personalized Medicine and Its Threat to Public Health[¾çÀå]

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¡°Incisive . . . Tabery is a penetrating critic, positing that research on personalized drugs takes up an oversize share of funding because it¡¯s more profitable than investigating environmental determinants of health. . . . This damning take on scientific bias is not to be missed.¡±¡ªPublishers Weekly (starred review)

¡°An accessible narrative bolstered by prodigious research . . . An engaging, provocative study of a much-hyped aspect of American health care . . . Tabery succeeds in raising a compelling alarm about where things stand and making clear that the current situation could have been much different, all while laying the groundwork for an alternative future.¡±¡ªKirkus Reviews

¡°The majority of the common diseases that take a large toll on health in America are caused by lifestyle and environmental factors, or those factors combined with genetics. Yet biomedical research today is focused on genes and exorbitantly expensive gene-based therapies¡ªto the detriment of our health and our pocketbooks. In this powerful book, James Tabery explains how and why the promise of ¡®personalized¡¯ and ¡®precision¡¯ medicine has failed us. A must-read for doctors, patients, scientists, and anyone who cares about the future of health in America.¡±¡ªNaomi Oreskes, co-author of Merchants of Doubt: How a Handful of Scientists Obscured the Truth on Issues from Tobacco Smoke to Global Warming

¡°James Tabery¡¯s book makes the case for why the revolutionary promise of precision medicine has been, at best, elusive and, at worst, a distraction from the revolution we truly need: a radical reimagining of how we prevent disease in our society.¡±¡ªSandro Galea, author of Well: What We Need to Talk About When We Talk About Health

¡°Tyranny of the Gene is an extraordinary and invaluable investigation into the prevailing fashions of twenty-first-century medical research, and the price we may be paying for the very questionable promise of personalized medicine.¡±¡ªGary Taubes, author of Why We Get Fat

¡°We have long known that the best way to improve the nation¡¯s health is to clean up the environment and enhance social equality. Instead, as Tyranny of the Gene brilliantly shows, we are investing in gene-based personalized medicine, catering to the most privileged patients and enriching pharmaceutical companies. By unraveling the financial, political, and scientific history of hyping genetics¡¯ failed promises, Tabery makes a compelling case for changing course toward a healthier future for all.¡±¡ªDorothy Roberts, author of Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-first Century

¡°Tyranny of the Gene will challenge your thinking about the ¡®miracle cures¡¯ of DNA-based personalized medicine. In documenting the rise of genetically-based treatments, Tabery reveals the scientific, financial and political forces that have promoted this technology ¡ª much to the detriment of health care equality and public health research. Deeply investigated and fluidly told, this is a book that commands our attention.¡±¡ªDouglas Starr, author of Blood: An Epic History of Medicine and Commerce

¡°Tabery¡¯s fascinating and unique book is a much-needed critique of our current obsession with genetics, personalization, and individualism in health. A compelling mix of history of science, political intrigue, and public health policy, the book tells us how we got here £¿ and, more importantly, why this is the wrong place to be. A must read for anyone interested in the massive disconnect between what we invest in to make us healthy and what actually matters.¡±¡ªTimothy Caulfield, author of Relax, Dammit!: A User's Guide to the Age of Anxiety

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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 m

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A revelatory account of how power, politics, and greed have placed the unfulfilled promise of personalized medicine at the center of American medicine

The United States is embarking on a medical revolution. Supporters of personalized, or precision, medicine¡ªthe tailoring of health care to our genomes¡ªhave 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¡ªessentially a marketing idea dreamed up by pharmaceutical executives¡ªand 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.

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