By J Capone, Agriculture and Environmental Education Major, ’24
The Willowbrook State School was a housing institution created by New York State in 1947 to house intellectually disabled children and young adults. At the time, there were little to no public resources for caregivers, and state schools like Willowbrook were created to address that problem. Conditions at Willowbrook were horrific – rampant disease, neglect, and abuse meant most individuals lived sad lives on the grounds of the institution. Robert Kennedy, then-senator of New York, described it as a “snake pit” after his unplanned visit in 1965 exposed horrific conditions. Dr. Saul Krugman, a professor of epidemiology, was brought to Willowbrook in 1955 to control and mitigate the spread of infectious diseases that spread like wildfire through the halls. However, Krugman didn’t necessarily prevent the spread of disease; in some cases, explicitly encouraged it amongst residents, so he could test his theories on possible treatments. Thus, the Willowbrook Study was born.
Built on Staten Island to originally house 4,000 patients, the institution quickly swelled in population to 6,000, peaking in 1969 at 6,200 . There were often not enough resources, including basic clothing and staff, to go around. Conditions at Willowbrook were grim; some 60% of patients were not toilet trained, and others could not feed or bathe themselves . Abuse and neglect ran rampant, along with infectious diseases that patients suffered from due to unsanitary conditions. Facing these problems, the directors of the institution hired Dr. Saul Krugman from NYU medical school in 1955 to deal with the state of endemic diseases facing patients at Willowbrook. Dr. Krugman began by implementing an epidemiological survey to calculate the extent of the problem. These surveys discovered that children had a 1 in 2 chance of catching hepatitis in their first year at Willowbrook . Further surveys showed 90% of patients had markers for hepatitis A, indicating a previous infection . Hepatitis A is a disease that affects the liver, causing jaundice, loss of appetite, abdominal pain, and is usually spread via fecal to oral contamination. Dr. Krugman’s studies also discovered the strain of hepatitis B, a sexually transmitted disease that lived in both adult and child populations in Willowbrook. In an institution where over half of the population was not toilet trained with not enough caretakers to go around, it was unquestionable how hepatitis became such an intense and ingrained problem in Willowbrook’s halls .
Faced with these grim conditions, Dr. Krugman came to a conclusion; discovering a way to inoculate children against hepatitis would help not only those institutionalized but could reap benefits around the world. In short, he wanted to use the conditions already established at Willowbrook to create a vaccine for hepatitis. Gathering consent from parents, Dr. Krugman and his team ran several experiments to observe the benefits of gamma globulin injections, a type of antibody-containing blood plasma, from those who have recovered from hepatitis into those who have not yet been infected . Some experiments exposed children to hepatitis with no administered globulin injections; others were injected and then exposed to the virus; and some were injected and were never exposed to the virus, all carefully observed by the medical team. One way the study exposed children to the hepatitis virus was by taking the feces of infected residents and combining it with chocolate milk for the study’s participants to consume unwittingly . The children who participated in these studies were housed separately from the rest of the patients, in newer, cleaner facilities with round-the-clock care, while the other residents of Willowbrook still lived in squalor . Krugman’s studies later encapsulated measles and rubella studies, resulting in his 20+ year stay as a medical director at Willowbrook. Only much later in his career did he receive backlash from the medical community regarding his study participants and methods.
Krugman claims he did not choose Willowbrook because he could prey on vulnerable disabled children. Instead, he argues that his experiments helped the children at Willowbrook and defended their morality and ethics until the day he died. He argued hepatitis was already rampant at Willowbrook; anyone who came to live there was bound to get it at some point. Under his lab’s controlled experiments, Dr. Krugman argued, the patients had better care and a better chance of survival than in the main facilities at Willowbrook . In the study, residents had the opportunity to become immune to hepatitis without ever falling ill and facing its dangerous effects through Dr. Krugman’s experiments. Even if they did, they had access to excellent care from his team of doctors and nurses. However, Krugman missed a key component of any study’s ethical backing. Purposefully infecting children with hepatitis, no matter how “likely” it is they will get it in the future, puts them needlessly in harm’s way. No matter how well cared for the patients were, hepatitis is known to be a potentially fatal disease. Additionally, the infection method of feces-contaminated food and drink is a deplorable method that hints at possibly worse conditions of the Willowbrook study. Nobody, no matter what they’ve consented to, should be unwittingly drinking human excrement. This egregious violation of moral and ethical standards, even to professionals in the 1950s and 60s, shows how poorly these patients were treated. Every physician takes an oath to first do no harm. Dr. Krugman violated this with his treatment of intellectually disabled children at Willowbrook State School.
Other issues regarding the Willowbrook Study were the methods of informed consent. On paper, everything seemed fine. Potential patients’ parents were given a tour of the facility, allowed to ask questions to the researchers, and were given various forms of education on the purpose of the study. They met with a social worker and were allowed to discuss the study with their private doctors if they wanted to. Parents knew they could withdraw from the study at any time. No orphan or ward of the state was allowed to become a potential participant in the hepatitis studies. Dr. Krugman also asserts that their methods of informed consent were innovative, and paved the way for the standard of human experimentation. However, there is evidence to suggest that the undue influence of admittance to Willowbrook is a further kink in Krugman’s ethical armor. Willowbrook was already inundated but was one of the only state institutions for intellectually disabled children operating in New York State. Parents believed that the only way to get their child into the selective school was by allowing them to participate in the hepatitis study, as that gave them priority registration. Otherwise, these caregivers had practically no options. State institutions were some of the only interventions available at the time. Willowbrook already had a huge waitlist while operating at 1.5x capacity. Although sending your child to an overpopulated institution may not seem like the best option, sometimes it was all these families had to provide care for their loved ones. This instance of undue influence further establishes how unethical Dr. Krugman’s study was.
What brought the downfall to a 20-year study? Geraldo Rivera, an up-and-coming investigative reporter, created a documentary airing on ABC in 1972 showing the horrible abuse and neglect people at the Willowbrook State School had to endure. Willowbrook: The Last Great Disgrace led a call-to-arms from the people of Staten Island, who were horrified such an atrocity could occur on their very shores. A class-action lawsuit was filed that same year, with a final ruling that Willowbrook had to begin closing procedures in 1975. Around this time, other members of the medical field started criticizing Dr. Krugman’s studies and questioned the necessity of human experimentation for immunization studies. Dr. Krugman’s later studies developing hepatitis B vaccines using chimpanzees created conflict in the medical community, as chimpanzees are considered an acceptable model for human epidemiology studies for vaccine development, yet Krugman decided on human trials before primates. However, even after the study ended at Willowbrook, Dr, Krugman was still lauded for his advancements in the epidemiology field with not just hepatitis, but also developments of measles and rubella vaccinations later in his time at Willowbrook. Until the very end, Krugman defended his choices and decisions regarding the treatment and methods used at Willowbrook State School.
Public outrage over the conditions at Willowbrook spurred several laws and acts into being over the 70s and 80s. After the 1972 class action lawsuit was settled in 1975, the Willowbrook Consent Decree was signed, stating that the institution had to start deflating its population from around 5,000 to 250 in six years, among other reforms regarding the treatment of patients at the facility. Other acts, such as the Education for All Handicapped Children Act (1975) and the Bill of Rights Act (1975) worked to ensure disabled populations were protected in society. Other programs, such as the Protection and Advocacy System of the Developmental Disabilities Assistance were formed to further preserve the rights of disabled individuals. The Belmont Report, published in 1976, also worked to establish ethical standards regarding human experimentation revolving around their three principles: Respect of Persons, Beneficence, and Justice.
The tragedy of Willowbrook State School is a permanent mark on the scientific community’s mistreatment of human research participants. The unacceptable treatment and conditions that children and adults were forced to face while institutionalized were a disgrace to scientific research. While there have been many scientific discoveries resulting from this study, including the creation of a hepatitis A & B vaccine, the ends never justify the means in human experimentation.