Pop quiz: Name a state residential school where children were enrolled in medical experiments over an almost 20-year period in which they were unknowingly fed a steady diet of radioactive isotopes, subjected to regular blood draws, and placed in solitary confinement if they refused to cooperate.
Answer: the Walter E. Fernald State School in Waltham during the mid 20th century.
Unfortunately, as Allen Hornblum, Judith Newman, and Gregory Dober painfully describe in their chilling new book, “Against Their Will: The Secret History of Medical Experimentation on Children in Cold War America,’’ Fernald was not the only institution in the country, or even in the state, where children were conscripted into sometimes deadly medical experiments. These were conducted by ambitious physicians and scientists whose belief in what they were trying to accomplish often blinded them to the potentially horrific consequences of their actions.
“Against Their Will’’ opens with an overview of the eugenics movement in the United States, which found sympathizers among many luminaries of American medicine in the 19th and early 20th centuries. With its disdain for the disabled, who were considered genetically inferior, the movement paved the way for use of “defective’’ children in research. The book then provides multiple examples of medical experiments perpetrated on developmentally delayed and physically disabled children at multiple institutions across the country over the course of decades.
Often reading like case studies straight out of the 1947 Nazi doctors’ trial, these include the forced castration of dozens of boys to prevent or halt regular masturbation; infecting developmentally delayed children as young as 4 with gonorrhea; and treating children as young as 6 who had been diagnosed with schizophrenia or autism with twice-daily doses of LSD for months on end.
One of the most famous examples of the abuse of institutionalized children occurred at the Willowbrook State School on Staten Island, where hundreds of mentally and physically disabled children were purposely infected with hepatitis. While the experiments did yield information about the disease, there is no escaping the fact that these were conducted on children who were supposedly under the protection of the state and who had nothing to gain, but everything to lose, by participating.
Not that anyone ever bothered to ask the children, however. As the authors pointedly note elsewhere, they were viewed as “cheap and available test subjects.” They were not, after all, “members of the Boston Philharmonic Orchestra, the Massachusetts Chamber of Commerce, or the Harvard University faculty.”
The authors do not shy away from raising the difficult questions which inevitably arise. Writing about those who spoke up and challenged others conducting these experiments, for example, they ask: “Why were there so few who had the moral capacity to discern a wrong being committed and the personal courage to speak up about it? Thousands have suffered as a consequence.”
The authors do a terrific job of striking the right balance in detailing one of the darkest chapters in modern American medicine, perpetrated by some of the brightest women and men in the field who were affiliated with among the most prestigious scientific and medical institutions in this country. Using interviews with survivors and other primary sources, the authors weave a compelling and disturbing narrative that is neither sensationalist nor overly dry and academic, and which presents a riveting and disturbing story that unfortunately seems mostly to have been forgotten until now.
“Against Their Will’’ is an important book because, as it makes clear, the events it describes were not merely the isolated lapses of judgment and morality of a few depraved individuals. Instead, they were an expression of an outlook that valued the well-being of the collective over that of the individual, even when the price was the infliction of terrible suffering upon the most vulnerable members of society, an issue that sadly appears perennial.Dennis Rosen is a pediatric pulmonologist practicing in Boston whose book on communication between physicians and patients will be published by Columbia University Press in the spring