The occasional human sacrifice Medical experimentation and the price of saying no

Carl Elliott

Book - 2024

"Shocking cases of abusive medical research and the whistleblowers who spoke out against them, sometimes at the expense of their careers. The Occasional Human Sacrifice is an intellectual inquiry into the moral struggle that whistleblowers face, and why it is not the kind of struggle that most people imagine. Carl Elliott is a bioethicist at the University of Minnesota who was trained in medicine as well as philosophy. For many years he fought for an external inquiry into a psychiatric research study at his own university in which an especially vulnerable patient lost his life. Elliott's efforts alienated friends and colleagues. The university stonewalled him and denied wrongdoing until a state investigation finally vindicated h...is claims. His experience frames the six stories in this book of medical research in which patients were deceived into participating in experimental programs they did not understand, many of which had astonishing and well-concealed mortality rates. Beginning with the public health worker who exposed the Tuskegee Syphilis Study and ending with the four physicians who in 2016 blew the whistle on lethal synthetic trachea transplants at the Karolinska Institute, Elliott tells the extraordinary stories of insiders who spoke out against such abuses, and often paid a terrible price for doing the right thing."--

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2nd Floor New Shelf 174.28/Elliott (NEW SHELF) Due Dec 8, 2024
Subjects
Published
New York, NY : W.W. Norton & Company [2024]
Language
English
Main Author
Carl Elliott (author)
Edition
First edition
Physical Description
355 pages ; 24 cm
Bibliography
Includes bibliographical references (pages 323-339) and index.
ISBN
9781324065500
  • Introduction
  • Chapter 1. The Honor Code
  • Chapter 2. Tuskegee
  • Chapter 3. Willowbrook
  • Chapter 4. The Hutch
  • Chapter 5. Cincinnati
  • Chapter 6. The Unfortunate Experiment
  • Chapter 7. The Karolinska
  • Conclusion
  • Acknowledgments
  • A Note on Sources
  • Notes
  • Index
Review by Choice Review

Elliott (Univ. of Minnesota), a bioethicist with medical training, publicly protested a psychiatric study at his own institution that violated informed consent standards and triggered a patient's suicide. He opens the book with an account of his struggle and his reasons for investigating why individuals become whistle-blowers and how their experiences affect their perspectives on the medical profession's integrity. The core chapters present a chronological series of five iconic incidents, from the mid-20th-century US government-sponsored Tuskegee syphilis study to the recent case of synthetic trachea transplants in Sweden. Elliott relies on first-person accounts and, whenever possible, interviews key players himself. With journalistic flair, he intersperses demanding explanatory material with engaging anecdotes revealing their personalities. Elliott finds that whistle-blowers share an ingrained sense of personal honor, compelling them to speak out against wrongdoing. He also notes common patterns in their experiences: institutional resistance, protracted struggles, damaged careers, bruised morale, and frustration with the limited impact of their efforts. Echoing this frustration, in the conclusion Elliott points out that whistle-blowing--or the threat of it--will not reform the professional and institutional cultures that enable unethical medical research. Summing Up: Recommended. All readers. --Melody Herr, University of Arkansas

Copyright American Library Association, used with permission.
Review by Booklist Review

The phrase, abusive medical experiments on human beings evokes terror. When desperately ill and vulnerable people are subjected to unethical research protocols and treatments, who's the watchdog for such wrongdoing? In bioethicist Elliott's opinion, that responsibility too frequently falls on a small number of morally courageous whistleblowers. He recounts stories about dangerous, unethical physician-researchers and shares interviews with some conscientious whistleblowers who called out the culprits' inexcusable actions. At the Willowbrook State School in New York, a study of hepatitis involved purposely injecting intellectually disabled children with the virus. In New Zealand, women with cancer in situ of the cervix were misled by a doctor into believing they didn't require any treatment. In Tuskegee, the Public Health Service lured Black men suffering from syphilis into an experiment in which no antibiotic for the infection was provided. In Cincinnati, a physician carried out research that subjected cancer patients to total body irradiation known to be without benefit for them. In these cases and others, whistleblowers summoned integrity, perseverance, and a commitment to justice to uncover misconduct despite considerable cost to their careers, reputations, well-being, and personal lives. Elliot's exposé of unconscionable medical experiments pays tribute to the often wounded truth tellers who unmask these appalling practices.

From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Publisher's Weekly Review

Medical research whistleblowers expose unethical studies for their own peace of mind, though doing so often leaves them feeling isolated and betrayed, according to this riveting study. Bioethicist Elliot (White Coat, Black Hat) digs into the whistleblower mindset by profiling six of them and reflecting on his own daunting experience exposing a psychiatric drug study that resulted in a research subject's suicide. His most notable interviewee is Peter Buxton, who blew the whistle on the notorious Tuskegee experiment, in which Black men with syphilis went untreated in a study designed to track the disease's progression. Despite spending seven years battling to end the experiment, Buxton goes unmentioned in most accounts, partly because of the unusual way he became involved--as a syphilis contact tracer in 1970s San Francisco, he stumbled upon Tuskegee almost by happenstance. Buxton stands out among Elliot's subjects for having come through emotionally unscathed--he is serene in his certainty that "Nazi medicine" must always be opposed, and thus that his only choice was to fight. But the same inevitability was a source of anguish for the others, who perceived themselves as hopelessly boxed in; whistleblowing was "the only choice they had." Detailing the extreme pressures to stay loyal that whistleblowers face, Elliott paints a damning portrait of the medical community's workplace culture. Readers will be outraged and enthralled. (May)

(c) Copyright PWxyz, LLC. All rights reserved
Review by Kirkus Book Review

A striking account of medical malfeasance and the whistleblowers who have fought against it. Though he graduated from medical school, Elliott, author of White Coat, Black Hat, never practiced and now teaches philosophy, including a course on scandals in medical research and those who blew the whistle. In Hollywood movies, whistleblowers often struggle courageously before crushing the villain. In reality, they generally lose their jobs, pay their own lawyers' fees, and, blackballed within their profession, disappear into obscurity. Elliott's account of a handful of experiments makes for fascinating yet painful reading. In every case, many participants disapproved but kept quiet. The author concentrates on those who spoke up, and it is not a pretty picture. He begins with the infamous Tuskegee study, which began in 1932. "For forty years," writes Elliott, "the US Public Health Service had deceived and exploited hundreds of poor Black men with syphilis." From the late 1940s through the 1980s at Willowbrook, the massive Staten Island institution for children with intellectual disabilities, researchers deliberately infected children with hepatitis on the excuse that they would have gotten it anyway. A 1960s Pentagon-financed study at Cincinnati Medical Center aimed to determine how much radiation American soldiers could withstand. All subjects developed radiation sickness, and many died. Perhaps the most grotesque researcher in Elliott's harrowing narrative was Paolo Macchiarini, a charismatic, possibly psychopathic surgeon who became an international celebrity for developing a synthetic trachea that could replace one destroyed by cancer or infections. After years of fruitless whistleblowing, it finally became clear that the replacement trachea was worthless; all patients died after prolonged suffering. Elliott's whistleblowers have a spotty record; many victories were partial or occurred long after the fact; some failed; none prospered from their efforts. "Whistleblowing is a poor mechanism for institutional reform," he writes, and "full-blown success" is difficult to find. A disturbingly eye-opening must-read. Copyright (c) Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.