The Willowbrook State School, located in New York, was completed in 1942 for mental retarded children. Infectious hepatitis was first observed at Willowbrook in 1949. Statistics indicated that the annual attack rate of hepatitis was 25 per 1,000 among
children attending Willowbrook, but was increasing rapidly due to unsanitary conditions and overcrowding. The school was in need of a solution to the quickly spreading disease. During this time, Dr. Saul Krugman, a medical researcher from the New York University School of Medicine, visited Willowbrook as an investigator in infectious diseases. He concluded that they could successfully control hepatitis outbreaks in Willowbrook with well-designed studies on hepatitis, potentially leading to a vaccine. Dr. Saul Krugman conducted hepatitis studies at Willowbrook for more than 15 years. These studies were funded by the Armed Forces Epidemiological Board and approved by this board as well as executive faculty of the New York University School of Medicine.
Krugman studied the use of gamma globulin antibodies taken from the blood of hepatitis patients as a tool to create immunity for others. Krugman believed that if a child with protective antibodies was infected with hepatitis, the child would only obtain a mild case of hepatitis and would receive long-lasting protection against future, more hazardous
infections. The actual study involved more than 700 children at Willowbrook. The experimental group included children already at Willowbrook who were injected with protective antibodies. The control group did not receive the injection. Krugman then observed the degrees of immunity to hepatitis in both groups. In a second study, researches injected newly admitted children with protective antibodies. Some of these students were deliberately infected with a Willowbrook strain of the hepatitis virus. All participants in this experiment were housed in an isolated, well-staffed facility.
From the study, Krugman concluded that there are two types of hepatitis present at Willowbrook: hepatitis A and B. The children who were deliberately infected with hepatitis A virus presented a mild reaction such as a swollen liver, vomiting etc. However, Hepatitis B can lead to long-term infection. He also established that injections of gamma globulin are beneficial in the protection against hepatitis A virus.
The most unethical aspect of the study is deliberately injecting children with hepatitis. Krugman’s justification is that he required parent consent through a parental permission letter. However, many critics argue that the respect of persons and fairness were violated. For example, many participating children could not fully understand the risks of the study because of their mental conditions. Also, the parent consent letter seemed to downplay the risks involved.
Furthermore, in 1964, the main school was closed to admissions, with the exception of some openings in the hepatitis unit for children who would participate in the study. This provided strong incentives for parents to agree to the terms of the study. Also, why did the mentally retarded children have to be infected? Why wasn’t research conducted on the staff who had an equal chance of hepatitis infection?
In my opinion, I believe that Dr. Saul Krugman did not intentionally attempt to conduct an unethical experiment. He most likely believed that the benefits of the study (inventing a vaccine, preventing further illnesses) outweighed the potentially negative aspects. He also argued that there were no deaths and most cases of deliberate infection were very mild. However, he failed to consider an outsider’s perception of the study. From the perspective of an outsider, the Willowbrook case seems very unethical. Deliberately injecting a vulnerable group of children is atrocious. I realize that children infected with hepatitis are entirely unrelated to gamers, but I think that we can learn from this study. While conducting research for the Worldplay Research Initiative, we must be aware of how outsiders or other gamers may perceive us. It is easy to misinterpret motives or to transform innocent intentions into unethical research.