In 1972, the longest clinical trial in U.S. medical research history abruptly ended. Known to many as the Tuskegee Syphilis Study, this experiment has been studied by ethicists around the world. It has presented challenges in how to conduct ethical research without harming human subjects. "Chronicling the Tuskegee Syphilis Study" is a book that provides essays, commentaries, academic writings, and other documented works in order to give multiple insights and solutions to resolving dilemmas related to unethical clinical trials such as Tuskegee. It gives a perspective of the Tuskegee Syphilis Study from the unique vantage point of two brothers born in the hospital where the experiments took place. Join us as we share the story of Tuskegee with you.
#1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
The nearly forgotten story of the fight against the American Plan, a government program designed to regulate women’s bodies and sexuality “A consistently surprising page-turner . . . a brilliant study of the way social anxieties have historically congealed in state control over women’s bodies and behavior.” —New York Times Book Review Nina McCall was one of many women unfairly imprisoned by the United States government throughout the twentieth century. Tens, probably hundreds, of thousands of women and girls were locked up—usually without due process—simply because officials suspected these women were prostitutes, carrying STIs, or just “promiscuous.” This discriminatory program, dubbed the “American Plan,” lasted from the 1910s into the 1950s, implicating a number of luminaries, including Eleanor Roosevelt, John D. Rockefeller Jr., Earl Warren, and even Eliot Ness, while laying the foundation for the modern system of women’s prisons. In some places, vestiges of the Plan lingered into the 1960s and 1970s, and the laws that undergirded it remain on the books to this day. Nina McCall’s story provides crucial insight into the lives of countless other women incarcerated under the American Plan. Stern demonstrates the pain and shame felt by these women and details the multitude of mortifications they endured, both during and after their internment. Yet thousands of incarcerated women rioted, fought back against their oppressors, or burned their detention facilities to the ground; they jumped out of windows or leapt from moving trains or scaled barbed-wire fences in order to escape. And, as Nina McCall did, they sued their captors. In an age of renewed activism surrounding harassment, health care, prisons, women’s rights, and the power of the state, this virtually lost chapter of our history is vital reading.
The Search for the Legacy of the USPHS Syphilis Study at Tuskegee is a collection of essays that seeks to redefine the "legacy" of the infamous Tuskegee Syphilis Study in light of recent findings from other scientific studies that challenge the long-standing, widely-held understanding of the study. These essays are written with thoughtful attention to fully integrate the essayists' perspectives on the impact of the study on the lives of Americans today and place the legacy of the study within the evolving picture of racial and ethnic relations in the United States. Each essayist looks through his or her own personal and professional prism to give an account of what constitutes that legacy today. Contributors include the two leading historians of the Tuskeegee Syphilis Study and two former Surgeons General of the United States as well as other prominent scholars from the fields of public health, bioethics, psychology, biostatistics, medicine, dentistry, journalism, medical sociology, medical anthropology, and health disparities research.
NATIONAL BOOK CRITICS CIRCLE AWARD WINNER • The first full history of Black America’s shocking mistreatment as unwilling and unwitting experimental subjects at the hands of the medical establishment. No one concerned with issues of public health and racial justice can afford not to read this masterful book. "[Washington] has unearthed a shocking amount of information and shaped it into a riveting, carefully documented book." —New York Times From the era of slavery to the present day, starting with the earliest encounters between Black Americans and Western medical researchers and the racist pseudoscience that resulted, Medical Apartheid details the ways both slaves and freedmen were used in hospitals for experiments conducted without their knowledge—a tradition that continues today within some black populations. It reveals how Blacks have historically been prey to grave-robbing as well as unauthorized autopsies and dissections. Moving into the twentieth century, it shows how the pseudoscience of eugenics and social Darwinism was used to justify experimental exploitation and shoddy medical treatment of Blacks. Shocking new details about the government’s notorious Tuskegee experiment are revealed, as are similar, less-well-known medical atrocities conducted by the government, the armed forces, prisons, and private institutions. The product of years of prodigious research into medical journals and experimental reports long undisturbed, Medical Apartheid reveals the hidden underbelly of scientific research and makes possible, for the first time, an understanding of the roots of the African American health deficit. At last, it provides the fullest possible context for comprehending the behavioral fallout that has caused Black Americans to view researchers—and indeed the whole medical establishment—with such deep distrust.
Between 1932 and 1972, approximately six hundred African American men in Alabama served as unwitting guinea pigs in what is now considered one of the worst examples of arrogance, racism, and duplicity in American medical research--the Tuskegee syphilis study. Told they were being treated for "bad blood," the nearly four hundred men with late-stage syphilis and two hundred disease-free men who served as controls were kept away from appropriate treatment and plied instead with placebos, nursing visits, and the promise of decent burials. Despite the publication of more than a dozen reports in respected medical and public health journals, the study continued for forty years, until extensive media coverage finally brought the experiment to wider public knowledge and forced its end. This edited volume gathers articles, contemporary newspaper accounts, selections from reports and letters, reconsiderations of the study by many of its principal actors, and works of fiction, drama, and poetry to tell the Tuskegee story as never before. Together, these pieces illuminate the ethical issues at play from a remarkable breadth of perspectives and offer an unparalleled look at how the study has been understood over time.
Growing up in a New Jersey factory town in the 1980s, Daisy Hernández believed that her aunt had become deathly ill from eating an apple. No one in her family, in either the United States or Colombia, spoke of infectious diseases. Even into her thirties, she only knew that her aunt had died of Chagas, a rare and devastating illness that affects the heart and digestive system. But as Hernández dug deeper, she discovered that Chagas—or the kissing bug disease—is more prevalent in the United States than the Zika virus. After her aunt’s death, Hernández began searching for answers. Crisscrossing the country, she interviewed patients, doctors, epidemiologists, and even veterinarians with the Department of Defense. She learned that in the United States more than three hundred thousand people in the Latinx community have Chagas, and that outside of Latin America, this is the only country with the native insects—the “kissing bugs”—that carry the Chagas parasite. Through unsparing, gripping, and humane portraits, Hernández chronicles a story vast in scope and urgent in its implications, exposing how poverty, racism, and public policies have conspired to keep this disease hidden. A riveting and nuanced investigation into racial politics and for-profit healthcare in the United States, The Kissing Bug reveals the intimate history of a marginalized disease and connects us to the lives at the center of it all.
From the courtrooms of Nuremberg to the battlefields of the Gulf War, Undue Risk exposes a variety of government policies and specific cases, includingplutonium injections to unwilling hospital patients, and even the attempted recruitment of Nazi medical scientists bythe U.S. government after World War II.
The forty-year "Tuskegee" Syphilis Study has become the American metaphor for medical racism, government malfeasance, and physician arrogance. The subject of histories, films, rumors, and political slogans, it received an official federal apology f
According to Randall, Blacks suffer from the generational effect of a slave health deficit that was not relieved during the reconstruction period (1865-1870), the Jim Crow Era (1870-1965), the Affirmative Action Era (1965-1980), or the Racial Entrenchment Era (1980 to present). Repairing the health of Blacks will require a multi-facet long term legal and financial commitment.
