After World War II, the Nuremberg Code, a set of ethical principles for human experiments, pushed the notion of "informed consent" into the air of medical research. But in the years after its passage in 1947, scientists preyed upon vulnerable populations at an alarming rate, conducting dangerous, often life-threatening experiments on prisoners, people of color, and even children.
In Against Their Will: The Secret History of Medical Experimentation on Children in Cold War America, Philadelphia author Allen Hornblum, Penn State professor Judith Newman and medical journalist Gregory Dober explore the terrifying medical experiments done on institutionalized children during the Cold War. Across the country, the orphaned and mentally challenged children were used much like rodents to test the effects of radiation, psychedelics and viruses.
"This pattern of researching," Hornblum says, "knowing that they are not going to use the Phi Beta Kappa winners at Yale or Princeton," but "children [who] don't quite count as much," is what has made this history a sad one to write.
But also alarming is the secretive nature of these experiments. Subjects and parents had no idea what was occurring.
Take Charlie Dyer, an orphan who spent his teenage years in the 1950s at the Fernald State School in Waltham, Mass. Early on, Dyer was persuaded to join the new science club.
"They told us," that "they'd give us a Mickey Mouse watch and send us on field trips and to baseball games," he said. "We jumped at the chance to get in."
But trips proved to be rare. Isolated in a separate ward, the boys were forced to give blood and to relieve themselves in glass jars. When Dyer asked to leave the club, he was told he couldn't. Years later, he learned about his participation in a clinical trial to test the effects of radiation. Each morning for breakfast the boys were given oatmeal laced with radioisotope milk.
The period has been dubbed the "gilded age of medical research." From the 1950s to 70s, it was a time when medical discoveries trumped concerns for those "subjected to science," also the title of scholar Susan E. Lederer's book on the history of modern biomedical research.
As Hornblum reiterated, "there was this attitude that this was how you practiced medicine. . . The more research you did, the faster and higher you were going to rise in the academic and corporate arenas."
Giving this history a local angle are the experiments of University of Pennsylvania dermatologist Albert M. Kligman and Drs. Robert Weibel and Joseph Stokes Jr., both of Children's Hospital of Philadelphia.
Dr. Kligman, famous for patenting the acne medication, Retin-A, found a host of specimens who were mentally challenged children at the State Colonies for the Feebleminded in Vineland and Woodbine, N.J. With a grant from the U.S. Public Health Service, Kligman ran a study on severe scalp trauma by exposing young children to ringworm-infected hair. Another experiment exposed their scalps to formalin, a chemical similar to formaldehyde.
Dr. Weibel, who ran a meningitis study at Hamburg, a residential center for the mentally challenged in Berks County, mailed consent forms to parents after the trials had ended, asserting that the experiment had been approved by the Pennsylvania Association for Retarded Children. When asked if the subjects were monitored for pain or severe trauma following injection of the live virus, Weibel replied that "we take their temperature."
Together, Drs. Stokes and Weibel tested a live mumps vaccine on children at the Trendler Nursery School and the Merna Owens Home, both institutions for the mentally challenged. Of the sixteen healthy test subjects at the start of the trial - all less than ten years old - three later developed parotitis, an inflammation of the salivary glands.
But subject matter aside, the book drags on, dropping names and examples without ample time to reflect on them. Recollections of test subjects and scientists hang on the periphery of a narrative that could have been more authentic.
Yet the issue of whether children should be used as test subjects is current.
In March, the public reacted sharply after U.S. Health and Human Services Secretary Kathleen Sebelius asked a presidential commission to see if it was ethical to test an anthrax vaccine on children.
Though the study will not go forward, it raises an important ethical question about what populations may be used for clinical trials, particularly in the threat of a bioterrorism attack.
Needless to say, no one will be used "against their will."
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