Against Their Will is an extraordinary work, a plea for humanist ethics in science and medicine as against political and economic expediency. It takes us into even darker places than Hornblum's earlier book as it examines the long history of unethical experiments done on children in America. Hornblum and his co-authors trace the hideous practice of using children, even infants and pregnant women, as guinea pigs, back to the ideology of the eugenicists in the early 20th century.
Ostensibly practicing science in the heroic mold -- science was to cure all of mankind's ills -- doctors and scientists turned to the youth warehoused in orphanages, children's homes and hospitals as apt subjects for medical and other experiments. The children, who could not make any informed consent, were often labelled "feeble-minded," or were children with Downs Syndrome or cerebral palsy, or were just too poor and illiterate to make any fuss. Their parents often were not notified of the experiments, or they were overtly or subtly coerced to give consent.
The result was a series of experiments in hospitals and children's homes -- like Vineland, Willowbrook, or Wrentham -- seeking cures or treatments for pellagra, ringworm, hepatitis, diphtheria, and any number of ills. But the experiments wreaked untold and possibly still unreported havoc on the young children involved. One child subject the authors interviewed years later in adulthood insisted that some victims at Fernald State School in Massachusetts were "buried out there in paupers' graves... They killed them" (p. 146). Some of the experiments involved treatments for birth control, including use of forced sterilization and castration.
The children used as experimental subjects were often deliberately infected with diseases, and then given experimental treatments (many quite dangerous), or even no treatment at all, the better to observe the natural course of the disease for science's sake. Dr. Albert Kligman, a key figure in Hornblum's Acres of Skin, reappears in this new book, deliberately introducing ringworm fungus into experimentally induced wounds on retarded children, and withholding treatment to observe the course of the disease.
Between the early negative eugenics inspired experiments and the later use of children as experimental subjects, the monstrous example of Nazi science and bizarre and deadly medical experiments cast a shadow across the subsequent decades. Hornblum et al. describe the rise and rapid fall of the Nuremberg protocols, which were generally ignored by U.S. doctors and scientists. These professionals eviscerated the ethical commands around informed consent. One doctor, associated with the Army Epidemiological Board, is quoted as criticizing "the Nuremberg specter", which drives out "rational approaches" to using children as human subjects in medical research (p. 66).
But as the title of the book suggests, it was Cold War exigencies that gave medical and scientific researchers seeming carte blanche to conduct experiments on children (and prisoners, and elderly patients, and even prostitutes' clients), and all in the name of national security and protection from communism. Hornblum and his co-authors do an excellent job in explaining this complex history, and showing how the Department of Defense, the Atomic Energy Committee and the CIA funded experiments, including use of electric shock and LSD.
The book describes the work of noted child researcher Lauretta Bender, known for her famous Bender Gestalt Test, taught to generations of psychologists, who used both electric shock and LSD on children deemed schizophrenic or behaviorally disordered. Many of these experiments were reported in medical or psychological journals, discussed at public conferences. (Hank Albarelli and I explored some of this history as well in a 2010 article at Truthout.) In the Cold War environment that prevailed, few saw any problem with using children this way. Few objected they represented a vulnerable population.
The authors repeatedly show that these kinds of experiments were not isolated instances of medical or scientific malfeasance, but were part of science's mainstream culture. A radiation experiment on children conducted at the Wrentham State School for "feebleminded" and "defective boys" in Massachusetts, where children were injected with radioactive iodine, "was coordinated by researchers from Harvard Medical School, Massachusetts General Hospital, and the Boston University School of Medicine, and it was supported by the Radiological Health Division of the US Public Health Service" (p. 145). Behind the Cold War and eugenicist rationalizations, the authors demonstrate that careerist ambitions and stubborn narcissistic self-aggrandization were contributory causes to the sorry history they describe.
The revelations surrounding such celebrated cases of medical experimentation -- especially the Tuskegee experiments on African-American men and the Radiation experiments by the AEC and others -- led to the rise of more stringent ethical safeguards and the rise of institutional review boards, and some of the worst practices fell into disuse. Yet the authors document use of medical or psychological experiments on children even into the 1990s. They warn, as well, that much of the experiments on children have been placed off-shore, to other countries with less oversight, far away from the prying eyes of U.S. media.
This is a hard book to read. Not because it is difficult to read. On the contrary, it is quite well written. It is hard because the subject matter is so harrowing. The character of Albert Kligman loomed over most of Acres of Skin, and to a certain extent, helped unify that book. While Kligman briefly is mentioned in Against Their Will, the new book has no such unifying figure. Instead, there is a long list of doctors and scientists whose practices are made understandable by linking them to the larger themes around eugenics and the aims of the Cold War.
There is a happy myth propagated by educators and the media. It begins with the horrors of Nazi medicine -- of Mengele and the Nazi concentration camp doctors, of euthanasia and inhumane experiments -- and ends with justice at Nuremberg, and the formation of humane ethical protocols recognized by all humanity. The truth, however, is sadly quite different. The Tuskegee experiments turn out not to have been an abherration.
Whether it was the U.S. amnesty to the Nazi-like doctors of Japan's Unit 731, or the kinds of experiments Allen Hornblum has described in U.S. prisons, orphanages and state hospitals, or the recent revelations of post-World War II U.S. Public Health syphilis experiments on illiterate women in Guatemala, or even revelations about the "battle lab in the war on terror" that was experiments on interrogation and torture at Guantanamo, the reality of what was revealed at Nuremburg challenges our myth of being a "civilized" or humane world.
I imagine this book took a lot out of its authors. I imagine it will powerfully affect its readers as well. It should. When such reaction to terrible crimes and callous disregard for human welfare, especially for those most powerless among us, disappears, then we should be very, very afraid.
[Full Disclosure: I spoke briefly with Allen Hornblum during the period he was researching Against Their Will, and am listed in the Bibliography as someone interviewed for the book. Truly, my contribution was miniscule, speaking with Mr. Hornblum for a few hours one evening, and exchanging some emails. Still, I wish to state for the record that no one associated with this book made any input into this review, nor did I receive anything for writing it. I did, however, receive a free review copy of the book from the publisher, but without any formal agreement I would write any review of it.
This review has been expanded from an earlier review posted at Amazon.com.]
Crossposted from MyFDL