The Book Salon was well-received and with over 200 comments, it was a lively and informative discussion. Posted here is my introduction to the Salon.
Against Their Will: The Secret History of Medical Experimentation on Children in Cold War America is a crucially important work, closer to today’s headlines than we might like to admit.
From the well-known scandals at New York’s Willowbrook State School and Massachusett’s Fernald Developmental Center – both covered in the book – to more recent revelations about use of orphans and babies as guinea pigs in HIV and herpes-related experiments, stories related to informed consent and safety regarding use of children by medical and psychological researchers continue to haunt the practice of science.
By both federal regulations and widely accepted ethical doctrine, children are recognized as especially vulnerable members of the population. There are many laws and regulations that were written to protect them from the adult world, and that recognize their special status as protected individuals in society.
But those kinds of protections, including those written into laws meant to protect children as objects of medical or scientific experimentation, have repeatedly broken down, or been ignored.
Last March a special Presidential bioethics commission approved a limited and conditional set of trials of anthrax vaccine on children. While the approval was made subject to certain “safeguards,” anthrax vaccine critic Dr. Meryl Nass wrote, the commission’s decision was nevertheless “a green light to test a dangerous anthrax vaccine in children, and a second green light to test other ‘countermeasures’ in children, to circumvent existing FDA standards.”
Allen Hornblum and his co-authors, Penn State professor Judith Newman and writer Gregory Dober, would know all about this. Their book is a plea for humanist ethics in science and medicine as opposed to the political and economic expediency that too often dominate mainstream medical science.
Hornblum has trod similar ground before. In 1999 he authored Acres of Skin, a book that exposed the use of unethical experimentation on prisoners, a practice that continued for many decades. The lessons of that book – and even some of the actors involved, like Holmesburg prison doctor Albert Kligman – cross over to the work on children.
Hornblum and his co-authors trace the hideous practice of using children, infants and pregnant women as guinea pigs back to the ideology of the eugenicists in the early 20th century. 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. (Kudos to academic publisher Palgrave Macmillan for publishing this work.)
A 1961 radiation-related 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. Indeed, it is frightening to read over and over how avidly the doctors and scientists followed along, or even led the way in the evisceration of ethics involved.
For decades doctors and scientists had turned to 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 labeled “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.
As Hornblum, Newman, and Dober wrote: “The sad history of children, especially institutionalized ones, being used as cheap and available test subjects – the raw material for experimentation – started long before the Atomic Age…. Experimental vaccines for hepatitis, measles, polio, and other diseases; exploratory therapeutic procedures such as electroshock and lobotomy; and untested pharmaceuticals such as curare and Thorazine were all tested on children in hospitals, orphanages, and mental asylums as if they were some widely accepted intermediary step between chimpanzees and humans. Occasionally children supplanted the chimps” (p. 9).
Hornblum and his co-authors conclude that while lots of lip service has been given to the promulgation of the Nuremberg code of medical ethics, putting the interests of research subjects and their informed consent before anything was replaced by a Cold War emphasis on “the advancement of science” and “medical progress.” According to the late Yale professor and respected ethicist Jay Katz, quoted in Against Their Will, “the Nuremberg Code ‘was relegated to history almost as soon as it was born.’”
Hornblum and his co-authors trace back the origins of using children in medical experiments to assumptions about the “heroic” in science and medicine; to an ideology of eugenics that took the U.S. by storm in the late 19th and early 20th century; to the exigencies of total war that unfolded during World War II and subsequent Cold War calculations, replacing the protection of children, prisoners, etc. under the titanic clash of different states and social systems.
With reforms leading to the promulgation of more stringent ethical safeguards and the rise of institutional review boards, some of the worst practices fell into disuse. But the authors document use of medical or psychological experiments on children even into the 1990s. They warn, as well, that many of the experiments on children have been moved off-shore, to countries with less oversight, far away from the prying eyes of U.S. media.
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 the 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.