Deliberately infecting institutionalized, disabled children with the hepatitis B virus is an abuse of stunning proportions. Hepatitis B infection can lead to chronic hepatitis, resulting in cirrhosis, liver cancer, and death. It is even more dangerous in children than it is in adults. According to the Department of Health and Human Services, 2–6 percent of adults infected with hepatitis B will go on to develop chronic hepatitis, while for children under the age of nineteen the likelihood of chronic infection is 30 percent. In addition, unlike those infected with hepatitis A, between 6 and 10 percent of young adults infected with hepatitis B become carriers capable of passing the potentially lethal virus on to others. This became an issue for some parents who took their infected children out of Willowbrook and tried to enroll them in public schools, only to be informed by school authorities that they were a risk to other children.
How bioethicists could have misunderstood the Willowbrook hepatitis research for so long is a mystery. The controversy over it helped establish bioethics as an academic field. It was considered in a 1969 issue of the journal Daedalus, “Ethical Aspects of Experimentation with Human Subjects.” It was one of the scandals that triggered the 1974 National Research Act, which established the current system of protecting human research subjects. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research discussed Willowbrook in its 1978 report “Research Involving Those Institutionalized as Mentally Infirm.” Yet none of these publications mentions the true horrors of the Willowbrook story.
In her chilling book, Dangerous Medicine: The Story Behind Human Experiments with Hepatitis, Sydney Halpern shows that Willowbrook was only one piece of a much larger and more sinister research program. For thirty years American researchers conducted hepatitis “challenge studies,” deliberately infecting a variety of vulnerable subjects with hepatitis A, hepatitis B, and even (unknowingly) hepatitis C. Mentally disabled children were not the only victims. The researchers also infected psychiatric patients, prison inmates, and draft objectors. More than 3,700 subjects, all of them living in institutional settings, were enrolled in the hepatitis experiments. More than eight hundred of them were children. As many as 25 percent were African American. “I know of no series of problematic infectious disease studies that involved a wider array of devalued and stigmatized groups,” Halpern writes. She estimates that the researchers transmitted blood-borne hepatitis to more than one thousand people.