The Duality of Medicine: The Willowbrook State School Experiments
As Dr. Saul Krugman strolled through the grounds of the Willowbrook State School of Staten Island in the early 1950s, an excitement overtook him. The directors of the school had just asked Krugman, an expert in Infectious Disease at New York University Medical Center, to investigate the outbreaks of infectious diseases at the institution (Krugman 158). Krugman had an interest in hepatitis specifically and saw an opportunity to further pursue his research. His research, however, involved intentionally infecting children at the school with the disease in order to determine the pathophysiology of the disease. Additionally, Willowbrook State School was not a traditional school but instead was a state-run institution for children with intellectual disabilities. Krugman’s story is far more complex than a series of unethical experiments. His work led to several important discoveries about the nature of hepatitis and the eventual development of a vaccine. Critics have debated Krugman’s claims of acting ethically, and logical arguments can be made for both sides. Nevertheless, Krugman’s research and its criticisms show a duality within medicine: the conflict between maximizing benefit to an individual patient versus maximizing the benefit to society.
Krugman and his team began their experiments at the Willowbrook School around 1955, and in his own words, Krugman hoped his research would “shed new light on the natural history and prevention of the disease—new knowledge that could conceivably lead to the development of a vaccine” (Krugman 159). One important aspect of the research was the identification of two distinctive strains of hepatitis. Krugman was the first to distinguish between the MS-1 and MS-2 strains of hepatitis, which are more commonly referred to as hepatitis A and B, respectively (Krugman 161). Based on this discovery, Krugman’s focus shifted towards identifying the pathways by which the two strains spread. He found that hepatitis A spreads through the fecal-oral route, while hepatitis B spread through intimate physical contact and the transfer of bodily fluids (Krugman 161). In 1970, 15 years from the start of his study, he developed a prototype of an inactivated hepatitis B vaccine: a non-infectious strain of hepatitis B that served to protect humans from contracting the disease. His vaccine was rather simple: serum from the plasma of those infected with hepatitis B, diluted 1:10 with distilled water, and boiled (Krugman 161).
Though Krugman’s goals and results from the experiments were clear, his methods were morally questionable. Out of the grey area of the Willowbrook experiment comes two profound viewpoints on doctoring. While his critics focused on the harm done to the patient, Krugman believed his research was justified as it helped so many more than it may have harmed:
“My colleague, the late Dr. Joan P. Giles, expressed it beautifully and succinctly in her letter to the Lancet, published May 29, 1971, in which she said, “A farmer may pull up corn seedlings to destroy them or he may pull them up to set them in better hills for better growing. How then does one judge the deed without the motive?” This describes the motivation for our studies at Willowbrook State School.” (Krugman 161)
Krugman put forth the principle that his research undoubtedly maximized the well-being of future generations. However, many critics argue that Krugman failed to consider an alternate viewpoint on physician hood which regards the patient’s well-being as most paramount.
One troubling aspect of Krugman’s experiments was his method of obtaining consent. He extensively informed parents of the risk and rewards of the experiment, gave them tours of the facilities, and allowed them to ask any questions about the social workers taking care of their children (Krugman 1020). However, there was an inherent incentive towards giving parental consent. Due to the strain of hepatitis being very prevalent and mild at Willowbrook, parents might have chosen to take the risk of admitting their children to Krugman’s ward in the hope their child would have better overall health, as the rest of Willowbrook was poorly run. Another critical issue was Willowbrook being at full capacity. One email exchange implied that entering the hepatitis ward was the only way for children on the waiting list to gain entrance to the school (Hammond). Both of these issues speak to systematic issues in how Willowbrook was run. Although Krugman was not responsible to fix all of Willowbrook, Krugman made no efforts to promote change, and defended the Willowbrook’s director, Dr. Jack Hammond, while the experiments took place (Krugman 161). Despite potential issues with the research, countless institutions approved Krugman’s work. The New York University School of Medicine, New York State Department of Mental Hygiene, and the New York State Department of Public Health all approved the protocols for his various experiments (Krugman 160).
The first person to question Krugman was Dr. Henry Beecher, an anesthesiologist and promoter of medical ethics. Beecher included Krugman’s study amongst many others he found ethically dubious. He invoked a resolution adopted by the World Medical Association that stated, “Under no circumstances is a doctor permitted to do anything which would weaken the physical or mental resistance of a human being except from strictly therapeutic or prophylactic indications imposed in the interest of the patient” (Beecher 1359). To Beecher, chemotherapy, which induces severe side effects, would be ethical as a therapy for cancer as the individual patient’s benefit far outweighs the side effects.
In a “Letter to the Editor” in The Lancet, Dr. Stephen Goldby also argues against Krugman’s research. Goldby states that despite Krugman’s approval by various agencies and parental consent, his experiments were unethical. He, like Beecher, believed no child should be experimented on unless there was a clear benefit to the child, even with parental consent. Goldby wrote, “The duty of a pediatrician in a situation such as exists at Willowbrook State School is to attempt to improve that situation, not to turn it to his advantage for experimental purposes, however lofty the aims” (Goldby 749). While Krugman might respond saying that children have a milder form of hepatitis, the argument becomes fallacious when considering his future work. When developing the hepatitis B vaccine in the late 1970’s, Krugman tested the vaccine on chimpanzees (Gruber). Krugman could have done such experiments on chimpanzees from the start in order to observe hepatitis conditions but chose to use human subjects at Willowbrook.
Several other groups also lashed out at Krugman. Bob Morrow of the Mount Sinai Medical Committee for Human Rights and several Bellevue physicians demanded that Dr. Krugman be censured, the Willowbrook experiments end, and proper care be given to all patients at Willowbrook (Morrow). Senator Thaler of the New York State Senate strongly criticized Krugman, claiming his research did not promote health benefits to all children at the school. Thaler asked, “If it is so good for the kids they use, why don’t they do it for all the children at Willowbrook” (Krugman)? The conflict over Krugman’s role at Willowbrook again arose in these criticisms. Thaler and Morrow demanded the children be given access to any and all possible treatments for hepatitis, but Krugman, as a researcher, believed more testing and experimentation had to be done (Krugman). His prototypic hepatitis B vaccine would need more work to ensure its effectiveness in the future. The line between him and his critics was redrawn, with Krugman believing in a utilitarian future and his critics focusing on the patients at hand.
All the criticisms share a common theme: the emphasis on the patient. These criticisms all portray the idea of experimentation, especially on children, in a negative light, because to the critics, experimentation is not a physician’s duty. From the critics’ perspective, Krugman’s work should have focused on preventing future cases of hepatitis and treating current hepatitis cases.
In Krugman’s defense, he genuinely believed he had the best interests of the children in his ward at heart. In a telegram from Israel Epstein, the President of the Benevolent Society for Retarded Children stated, “The parents of the children who reside at the Willowbrook State School do not feel that their children are human guinea pigs. We are proud that our children can be an important part of society by helping in the research to develop much needed vaccines to eliminate infectious diseases” (Epstein). William A. Fraenkel, the President of the Association for the Help of Retarded Children, received a personal tour of the hepatitis unit at Willowbrook and came away impressed. When asked by another physician in 1961 to introduce another strain of hepatitis, Krugman refused on the basis that he only chose to do his experiments at Willowbrook because it was a very mild strain and children would have a high risk of exposure upon entry (Krugman). In a letter written in 1967 to Jack Hammond, the director of the Willowbrook State School, Fraenkel said the children received “individual care, love, and attention” (Fraenkel). While there might be criticisms against Krugman’s work, it is also clear one could argue in favor of his experiments.
The Willowbrook State School experiments continue to be hotly debated. Unlike some other studies, like the Tuskegee syphilis experiment, Krugman’s work is not as clearly morally reprehensible. In the Tuskegee experiments, scientists refused to give available syphilis cure to black communities in Tuskegee, Alabama, despite it being readily available. The scientists claimed that they wanted to observe the long-term effects of syphilis. There was no available cure for hepatitis at the time for the Willowbrook children. However, a study similar to Krugman’s likely could not be performed today, which suggests where medicine has shifted. After years of radical procedures and experimentation, the focus of medicine has shifted back on the patient. Ethics are now taught in medical schools, institutional review boards are now established, and patients expect more personalized care from their doctors. Krugman’s work was undoubtedly beneficial for future generations, but for those children from Willowbrook, the fact Krugman never once advocated for their rights continues to be ethically dubious.