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 1950’s, he became overwhelmed with excitement. The directors of the school had earlier asked Krugman, an infectious diseases expert at New York University Medical Center, to investigate why many of the children were struck with infectious diseases at the school and what could be done about it ("The Willowbrook Hepatitis Studies Revisited: Ethical Aspects”, 158). Krugman found that hepatitis was highly endemic at the school; he claimed over 90% of children had hepatitis at Willowbrook ("The Willowbrook Hepatitis Studies Revisited: Ethical Aspects”, 159). He saw a place to further pursue his research, which would go on to receive wide acclaim. Krugman’s research at the school would lead incredible discoveries about the nature of hepatitis. Krugman himself would be admitted into the National Academy of Sciences and win countless awards, including the prestigious Lasker Award (Saul Krugman—Awards). However, Krugman’s story is far more complex than a triumph over hepatitis. Krugman’s research involved intentionally infecting children at the school with the disease. To make matters worse, the Willowbrook State School was not a traditional school, but instead a school for children with intellectual disabilities. The Krugman case is thus complex, full of ethical questions essential to the practice of productive and reputable research. Critics have hotly debated Krugman’s claims that he acted ethically, and logical arguments can be made for both sides. Nevertheless, what is clear is that Krugman’s research and its criticisms clearly show the duality of medicine: the conflict between maximizing benefit to an individual patient versus maximizing the benefit to society.

Before looking at the research, one must understand why and how Krugman was able to do his work, and that involves starting with the Willowbrook State School. The New York Legislature authorized its construction in 1938, and at first, in the post-war era, it was a hospital for veterans. In 1951, it was converted to its original purpose, a school for the intellectually disabled (Rothman, 23). Krugman wrote that 60% of the population were not toilet trained and 64% were unable to feed themselves. Not only were the patients severely mentally handicapped, but the school was well over capacity. Within four years of opening, the number of residents exceeded the official capacity by 700. That number ballooned by 1963, when 6,000 residents lived in a space designed for 4,275 (Rothman, 23). The school was infamous for its poor conditions. In 1965 Senator Robert Kennedy described Willowbrook’s wards as “less comfortable and cheerful than the cages in which we put animals in a zoo” (Rothman, 23). It is not surprising with these conditions that hepatitis and other infectious diseases, such as measles, became endemic within the wards.

Dr. Saul Krugman was always interested in vaccines and he became a key player in both the measles vaccine in the early 1960’s and a rubella vaccine in the mid-1960’s (The NYU Physician). Thus, it was only natural then he turned his eye toward hepatitis and took on the opportunity to do comprehensive hepatitis research to hopefully discover a vaccine.

Krugman and his team began their experiments at the Willowbrook School around 1955, and their findings regarding the nature and treatment of hepatitis over the next 15 years would be staggering. 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” ("The Willowbrook Hepatitis Studies Revisited: Ethical Aspects”, 159). Krugman knew that due to the cramped, crowded conditions of the Willowbrook School, hepatitis was easily spread and a high percentage of the population had the disease. Because children were already at a high risk of contracting the disease, the ethical ramifications of intentionally giving the children the disease was not a concern to Krugman. In addition, Krugman’s epidemiological surveys had shown infections of hepatits in children had much milder symptoms. Krugman would carefully monitor the children who were part of the study, ensuring they had specially trained staff and lived in an isolated unit that was significantly better maintained than the rest of the Willowbrook School (Krugman, 1020).

The findings from Krugman’s work at Willowbrook were nothing short of groundbreaking. One of the important aspects of the research was the identification of two distinctive strains of hepatitis. Krugman was the first to distinguish between MS-1 and MS-2 strains of hepatitis, which are more commonly referred to as hepatitis A and B ("The Willowbrook Hepatitis Studies Revisited: Ethical Aspects”, 161). Based on this discovery, Krugman’s focus shifted towards discovering the pathways by which the two strains spread. He found that hepatitis A spread through the fecal-oral route, while hepatitis B spread through intimate physical contact and the transfer of body fluids ("The Willowbrook Hepatitis Studies Revisited: Ethical Aspects”, 161). With his end goal always being a vaccine, Krugman made a major breakthrough in 1970, 15 years from the start of his study. He developed a prototype of an inactivated hepatitis B vaccine that would be the basis for the eventual hepatitis B vaccine. His vaccine was rather simple: by taking serum from the plasma of those with hepatitis B, diluting it in a 1:10 ratio with distilled water, and boiling the mixture, he found he could create a non-infectious, but protective vaccine ("The Willowbrook Hepatitis Studies Revisited: Ethical Aspects”, 161).

Though Krugman’s goals and results from the experiments were clear, his methods were morally questionable. 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” ("The Willowbrook Hepatitis Studies Revisited: Ethical Aspects”, 161).

Krugman put forth a utilitarian viewpoint. His research undoubtedly maximized the well-being of future generations. This is one way to look at being a physician, and it certainly is a rather macroscopic view. The other way to look at being a physician is maximizing the well-being of the patient. Did Krugman attempt to do this? His critics argued otherwise.

One troubling aspect of Krugman’s experiments was the concept of consent. Krugman’s methods of obtaining consent were ethically valid; he extensively informed parents of the risk and rewards of the experiment, gave them a tour of the facilities, and allowed them to ask any questions of the social workers that would be taking care of their children (Krugman, 1020). Issues arose in the Willowbrook experiments because there was an inherent bias toward giving consent for your child to participate in the experiments. The quality of care was significantly higher in Krugman’s isolated unit than the rest of the Willowbrook school, such that parents would have been more likely to exchange their children’s health for better care. Another critical issue was that Willowbrook was already over capacity, and 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 (Letter from Dr. Jack Hammond to Miss Muriel McInerney). Both of these issues again speak to systematic issues in how Willowbrook was run. Therefore, is it possible to blame Krugman? Perhaps not, it was not his responsibility after all to fix the institution. Nevertheless, Krugman made no efforts to promote change, and in fact defended the director of the Willowbrook State School, Dr. Jack Hammond, at the time these experiments were run ("The Willowbrook Hepatitis Studies Revisited: Ethical Aspects”, 161-162).

    For a decade, Krugman’s work went unquestioned by the scientific community. 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 the various experiments. ("The Willowbrook Hepatitis Studies Revisited: Ethical Aspects”, 160) The first to truly question Krugman was Dr. Henry Beecher, an anesthesiologist and promoter of medical ethics. Beecher included Krugman’s study amongst many others he finds ethically dubious. He invoked a resolution adopted by the World Medical Association that states, “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). Beecher argued that a physician should never intentionally harm a patient, mentally or physically, unless that action had the overall intention of benefiting the patient in the long term. Something like chemotherapy, which induces severe side effects, would be ethical to give to patients as it is a therapy for cancer. Beecher viewed it problematic to induce illness in others, even if it meant benefiting many more.

When developing the hepatitis B vaccine in the late 1970’s, Krugman tested that vaccine on chimpanzees (Gruber). Why then, could he not have done such experiments on chimpanzees from the start in order to observe hepatitis conditions? In that same letter, a Lancet editor agrees with these criticisms. The editor writes, “Dr. Golby asks The Lancet a question it ought to have faced long ago. The journal’s eagerness to discuss all the events in the elucidation of the spread of hepatitis left it exposed to these criticisms, which we accept” (Goldby, 749). All the criticisms share a common theme, the emphasis on the patient. They all portray the idea of experimentation, especially on children, in a negative light because to them experimentation is not a physician’s duty. To his critics, Krugman’s work should have focused on preventing and treating the hepatitis already present in the institution.  

In Krugman’s defense, it does seem that he genuinely thought he had the best interests of the children within his ward at hand. Krugman put in place an extensive informed consent plan and parents seemed to fully understand the experiments. 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” (Telegram from Mrs. Israel Epstein to Gabe Pressman). Parents did not seem to take issue with the experiments, so should medical ethicists take issue? 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. In a letter to Jack Hammond, the director of the Willowbrook State School, Fraenkel said the children received “individual care, love, and attention”. He believed the protests against Krugman were unfair and hoped they will stop (Letter from Dr. William A. Fraenkel to Dr. Jack Hammond). When asked by another physician to introduce another strain of hepatitis in another study, 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 be virtually guaranteed to be exposed to it upon entry (Letter from Dr. Saul Krugman to Dr. Robert Campbell). Even some of Krugman’s biggest critics applauded him after finding out more about his research. Upon discovering that Krugman had developed a boiled hepatitis B vaccine, Senator Thaler, who opposed his work vehemently, claimed the research had been done well (Immunization is Reported in Serum Hepatitis Tests).

Krugman was correct in saying hepatitis itself is usually a mild disease in children, but the fact remains that he continuously exposed an incredibly disadvantaged population to the possible symptoms of hepatitis, including fever, nausea, vomiting, and more. The very nature of the experiment, in which infected fecal matter was collected and then fed to children to induce the disease, sounds concerning (Letter from Dr. Saul Krugman to Dr. Harold H. Berman). The children received adequate care, certainly compared to what Willowbrook could offer within the confines of the general population, but does that validate Krugman’s decision? Hepatitis is caused by a microscopic virus, but at Willowbrook, what allowed its spread was the condition of the school itself. Eventually the school was closed down, but Krugman never seemed to have any interest in advocating for the rights of these children by pushing forward reforms to the school itself. His position is a tricky one, however. Is it the role of a physician to undertake such an endeavor? To Krugman, it was not his place. He was at Willowbrook to further the treatment of infectious diseases as a whole, which he accomplished.

The Willowbrook State School experiments will continue to be hotly debated, and it’s clear to see why. Unlike some other studies, like the Tuskegee syphilis experiment, Krugman’s work is not as clearly morally reprehensible. However, a study likely could not be performed today however, and I believe that says something about where medicine has shifted. The focus, after so many long years of experimentation and radical procedures, seems to have shifted back to be patient-centric. Medical ethics courses are taught in medical schools, institutional review boards are stricter, and patients expect more personalized care from their doctors. Overall, Krugman’s work was undoubtedly beneficial for future generations, but it is clear that he could have done so much more for the children at the school.

 

Works Cited

 

Beecher, Henry K. "Ethics and Clinical Research." New England Journal of Medicine 274.24    (1966): 1354-360. Web.

Goldby, Stephen. "Experiments At The Willowbrook State School." The Lancet 297.7702        (1971): 749. Web.

Gruber, Jack. Dental News, 1982; [Saul Krugman Papers]; The Lillian and Clarence de La    Chapelle Medical Archives, NYU Health Sciences Library.

Immunization is Reported in Serum Hepatitis Tests, 1971; [Saul Krugman Papers]; The Lillian    and Clarence de La Chapelle Medical Archives, NYU Health Sciences Library.

Krugman, S. "Viral Hepatitis. New Light on an Old Disease." JAMA: The Journal of the    American Medical Association 212.6 (1970): 1019-029. Web.

---. "The Willowbrook Hepatitis Studies Revisited: Ethical Aspects." Clinical Infectious    Diseases 8.1 (1986): 157-62. Web.

Letter from Dr. Jack Hammond to Miss Muriel McInerney, 1967; [Saul Krugman Papers]; The    Lillian and Clarence de La Chapelle Medical Archives, NYU Health Sciences Library.

Letter from Dr. Saul Krugman to Dr. Harold H. Berman, 1957; [Saul Krugman Papers]; The    Lillian and Clarence de La Chapelle Medical Archives, NYU Health Sciences Library.

Letter from Dr. Saul Krugman to Dr. Robert Campbell, 1961; [Saul Krugman Papers]; The    Lillian and Clarence de La Chapelle Medical Archives, NYU Health Sciences Library.

Letter from Dr. William A. Fraenkel to Dr. Jack Hammond, 1967; [Saul Krugman Papers];    The Lillian and Clarence de La Chapelle Medical Archives, NYU Health Sciences    Library.

MD Hits Back at Thaler Over Retarded Children, 1967; [Saul Krugman Papers]; The Lillian and    Clarence de La Chapelle Medical Archives, NYU Health Sciences Library.

Morrow, Bob. Human Experimentation; [Saul Krugman Papers]; The Lillian and Clarence de La    Chapelle Medical Archives, NYU Health Sciences Library.

Offit, Paul A. Vaccinated: One Man's Quest to Defeat the World's Deadliest Diseases.    Washington, D.C.: Smithsonian, 2007. Print.

Rothman, David J., and Sheila M. Rothman. The Willowbrook Wars. New York: Harper & Row,    1984. Print.

Saul Krugman—Awards; [Saul Krugman Papers]; The Lillian and Clarence de La Chapelle    Medical Archives, NYU Health Sciences Library.

The NYU Physician, 1982; [Saul Krugman Papers]; The Lillian and Clarence de La Chapelle    Medical Archives, NYU Health Sciences Library.

Telegram from Mrs. Israel Epstein to Gabe Pressman, 1967; [Saul Krugman Papers]; The    Lillian    and Clarence de La Chapelle Medical Archives, NYU Health Sciences Library.

The Willowbrook Experiments: Medical Fascism; [Saul Krugman Papers]; The Lillian and    Clarence de La Chapelle Medical Archives, NYU Health Sciences Library.