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Dr. Krugman and his team began their experiments on children in the Willowbrook State School around 1955 wherein they hoped to do research around Hepatitis in hopes of developing a vaccine by infecting mentally disabled children with Hepatitis. The experiments lead to being able to distinguish between Hepatitis A and B.

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Kush Fansiwala

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.

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The Duality of Medicine: The Willowbrook State School Experiments

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Kush Fansiwala 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).

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The Willowbrook School was located in Staten Island, New York and housed around 6,000 disabled students in terrible conditions. Participating in the study was a requirement of admission into the school.

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1955-1970: Saul Krugman, MD, conducted despicable medical experiments at Willowbrook

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Dr. Krugman deliberately infected mentally disabled children who were confined at Willowbrook School (NY) with hepatitis B. The school housed 6,000 children in abominable conditions. In one experiment, children were fed excrement containing live hepatitis B virus.

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The building was only meant to house 4,000 individuals. Underfunding and overcrowding created a situation of abuse, dehumanization, and a public health crisis. The children and adults were living in cramped quarters in filth. In some cases, patients were fed fecal matter of other infected individuals.

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New York State Association for Retarded Children v. Carey

A watershed case in the evolution of the legal rights of people with disabilities to live in dignity arose out of public awareness of the horrific conditions under which children and adults with disabilities were living at the Willowbrook State Developmental Center in New York. This case set important precedents for the humane and ethical treatment of people with developmental disabilities living in institutions. This, in turn, served as the impetus for accelerating the pace of community placements for people with developmental disabilities, expanding community services, increasing the quality and availability of day programs, and establishing the right of children with disabilities to a public education.

Inhumane Conditions at Willowbrook

Willowbrook was a complex of buildings on Staten Island housing children and adults with developmental disabilities. At its highest population, in 1969, 6,200 residents were living in buildings meant to house 4,000. Understaffed, overcrowded and underfunded, Willowbrook was little more than a "human warehouse," according to William Bronston, a physician at Willowbrook. The institution's overcrowding fostered abuse, dehumanization, and a public health crisis. Hepatitis was so rampant that several researchers took advantage of the situation to use residents as participants in a controversial medical study in which residents were intentionally exposed to the deadly virus, without their consent, in order to test the effectiveness of various vaccines.

In 1965, Senator Robert Kennedy paid an unannounced visit to Willowbrook. He found thousands of residents "living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo." Kennedy went on to describe the institution as a "snake pit." The visit put conditions at Willowbrook into the national spotlight and the state of New York responded by developing a five-year improvement plan. However, after making minor adjustments, conditions at the institution quickly reverted to the inhumane conditions that had thrust it into public consciousness.

In 1972, ABC News investigative reporter Geraldo Rivera again drew national attention to Willowbrook with a television exposé that was watched by millions. Willowbrook: The Last Disgrace, exposed the institution's serious overcrowding, dehumanizing practices, dangerous conditions and regular abuse of residents. The public was again outraged. However, this time, the outrage served to spur parent advocacy groups to take action in federal court.

The Willowbrook Lawsuit

Following the Rivera exposé, parents of Willowbrook residents filed a class action suit in U.S. District Court for the Eastern District of New York on March 17, 1972. The lawsuit alleged that conditions at Willowbrook violated the constitutional rights of the residents. Parents outlined multiple violations, including:

Confining residents for indefinite periods;

Failing to release residents eligible for release;

Failing to conduct periodic evaluations of residents to assess progress and refine goals and programming;

Failing to provide habilitation for residents;

Not providing adequate educational programs, or services such as speech, occupational, or physical therapy;

Overcrowding;

Lack of privacy;

Failure to provide protection from theft of personal property, assault, or injury;

Inadequate clothing, meals, and facilities, including toilet facilities;

Confining residents to beds or chairs, or to solitude;

Lack of compensation for work performed;

Inadequate medical facilities; and

Understaffing and incompetence in professional staff.

The lawsuit sought immediate injunctive relief to improve conditions at Willowbrook, including hiring more staff, providing adequate medical care, prohibiting the use of seclusion and improper physical and chemical restraints, and providing adequate and appropriate clothing and physical conditions for residents. The plaintiffs alleged that the existing conditions violated the residents' constitutional right to treatment under the Due Process Clause of the Fourteenth Amendment, and that their denial of a public education violated the Equal Protection Clause of the Fourteenth Amendment.

In April 1973, U.S. District Court Judge Orrin G. Judd rejected the plaintiffs' arguments that the Due Process Clause guaranteed a right to treatment and that the denial of public education violated the Equal Protection Clause. However, he did find that the conditions in Willowbrook violated the constitutional right of persons living in state custodial institutions to be protected from harm. According to Judge Judd, the plaintiffs' constitutional right to protection from harm in a state institution meant that the residents of Willowbrook were "entitled to at least the same living conditions as prisoners." This right, he continued, "may rest on the Eight Amendment, the due process clause of the Fourteenth Amendment or the equal protection clause of the Fourteenth Amendment (based on irrational discrimination between prisoners and innocent mentally retarded persons)." Accordingly, Judge Judd granted much of the requested injunctive relief, including prohibiting the use of seclusions and restraints, increasing medical, therapeutic and recreational staffing, requiring maintenance, and requiring regular progress reports.

With this injunctive order in place, the case proceeded to trial on October 1, 1974, with the parties continuing negotiations for months afterwards. The case was settled on April 30, 1975, when Judge Judd signed the Willowbrook Consent Judgment: New York State Association For Retarded Children, Inc., et al., v. Hugh L. Carey, 393 F. Supp. 715 (1975).

The Willowbrook Consent Judgment

The Willowbrook Consent Judgment set forth guidelines and requirements for operating the institution and established new standards of care for all Willowbrook residents at the time of the settlement. These standards of care were "not optimal or ideal standards, nor... just custodial standards." They were based on the recognition that people with developmental disabilities, "regardless of the degree of handicapping conditions, are capable of physical, intellectual, emotional and social growth, and upon the further recognition that a certain level of affirmative intervention and programming is necessary if that capacity for growth and development is to be preserved, and regression prevented."

The Consent Judgment outlined specific procedures and instructions for treatment of residents, covering issues such as resident living, the environment, programming and evaluation, hiring of personnel, education, recreation, food and nutrition, dental and medical care, therapy services, use of restraints, conditions for residents to provide labor to the facility, and conditions for research and experimental treatment.

Significantly, the Consent Judgment also declared as the primary goal of the institution and the New York Department of Mental Hygiene to "ready each resident...for life in the community at large" and called for the placement of Willowbrook residents in less restrictive settings. The Consent Judgment set a goal of reducing the number of residents living at Willowbrook to no more than 250 by 1981 although this did not prove feasible.

Although the parties ended up in Court many more times in disputes over the ongoing implementation of the Consent Decree, it was, in a sense, fully implemented in 1987, when the Willowbrook State School and Hospital officially closed.

What Happened Next?

The political reaction to this case led to the enactment of legislation such as:

The Developmental Disabilities Assistance and Bill of Rights Act and CRIPA were the first federal civil rights laws protecting people with disabilities, leading to the enactment of the Americans with Disabilities Act (ADA).

Willowbrook Resources and References

Videos and Multimedia Resources

Articles and Other Secondary Sources

This article was originally printed in the December 2012 issue of The Federal Lawyer and is used with permission.

Opinions

District Court

Initial Injunctive Relief: New York State Association for Retarded Children v. Rockefeller, 357 F. Supp. 752 (1973)

Approval of Consent Decree: New York State Association for Retarded Children v. Carey, 393 F. Supp. 715 (1975)

Consent Decree

US Court of Appeals, Second Circuit decisions concerning implementation of Consent Decree:

References

1. The Minnesota Governor's Council on Developmental Disabilities, The ADA Legacy Project, Willowbrook Leads to New Protections of Rights, Moments in Disability History 9, 2013. Can be found at: ^http://mn.gov/mnddc/ada-legacy/ada-legacy-moment9.html

2. ^New York State Ass'n for Retarded Children, Inc. v. Rockefeller, 357 F. Supp. 752, 764 (1975).

3. ^New York State Association For Retarded Children, Inc., et al., v. Hugh L. Carey,. 393 F. Supp. 715 (1975) at ¶1.

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The Closing of Willowbrook - Disability Justice

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A watershed case in the evolution of the legal rights of people with disabilities to live in dignity arose out of public awareness of the horrific conditions under which children and adults with disabilities were living at the Willowbrook State Developmental Center in New York.

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The adults and students in the Willowbrook State School were infected with primarily Hepatitis A without their consent or that of their parents or guardians.

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Main Article Content

Abstract

During the celebration of Rosh Hashanah (Jewish New Year) on September 25th, 2014, I conducted a daylong research endeavor at the Archives Office of the College of Staten Island in Staten Island, New York. My goal was to gather research information to prepare for a special education course presentation about the Willowbrook State School. Ironically, the land that once occupied the residential facility of Willowbrook State School now houses the buildings of the College of Staten Island. Willowbrook State School was once a state-supported institution for children with intellectual disabilities located in the Willowbrook neighborhood on Staten Island in New York City from 1947 until 1987.

The school that had been designed for 4,000 patients eventually became a physical dumping ground for mentally disabled children, eventually servicing well over 6,000 patients. The facility was understaffed. Patients were routinely locked in their rooms for extended lengths of time and forced to sleep on floors covered in their own excrement. Many children within the facility were malnourished because they were underfed. When patients were not locked in their rooms, they frequently ran the hallways partially dressed or even naked. Between 1963 and 1966, medical studies were conducted on children within the residential school, infecting them with hepatitis. In some cases, some patients were fed the fecal matter of other infected patients. Throughout the first decade of Willowbrook's operation, outbreaks of hepatitis, primarily hepatitis A, were common at the school. These outbreaks led to a controversial and unethical medical study conducted between the mid-1950s up to the 1970s by medical researchers Saul Krugman and Robert W. McCollum. These researchers conducted their experiments without the informed consent of patients or their guardians. Throughout this experiment, the researchers monitored patients with hepatitis in order to measure the effects of gamma globulin in combating the disease.

The college archives office location where I conducted my research was once the location of the main administration building for the Willowbrook State School. Even though I conducted most of my research that day in the archives office, my practical research of this significant subject matter began by photographing some of the former abandoned buildings of Willowbrook. As I took photographs of my physical surroundings, I felt the universality of injustice conducted by humankind. Whether it be medical or educational in nature, these lingering ties are atrocities that bind us. I thought about the Tuskegee Syphilis Study, the Jewish Holocaust in Europe, and other unreasonable tragedies that have harmed our global community. It was the spirit and nature of Willowbrook that resounded in my collective consciousness. I felt as if I had been there in some other space or time.

One particular abandoned building instantly grabbed my attention. I quickly decided to photograph this brick building on what seemed to be one of the rainiest days I had recently seen. This abandoned building apparently once housed one of Willowbrook's facilities. Its windows are now boarded up in dark brown wood. The dreariness of this day made the impact of taking photographs of the building even more dramatic and resonating. A few days after conducting research at the College of Staten Island, I began to reflect on ways in which I could tell the story of Willowbrook. As I contemplated various ideas, I thought that a collage depicting the abandoned building would shed light on the disabled men, women, and children who once called Willowbrook home.

As depicted in Image 1, the collage is a mixture of my building photograph and visual images I photographed at an exhibition about Willowbrook (see Image 2). In the artistic collage image entitled, Unheard Voices of Willowbrook, I highlight how, in many instances, our most vulnerable black and Latino children were unethically treated within the Willowbrook facility. In the collage image, we can visually see this old abandoned building which may have medically treated and housed residents at Willowbrook. At the left sided boarded window, I placed photographs of two older African American elders (male and female) who once lived at Willowbrook. I blackened their faces in order to empathize the concept of confidentiality. Through their hollowed and blackened eyes, I hear the tales of a thousand ancestral voices. But within the middle boarded window, I decided to leave two photographs of a young Latino boy's eyes visible in order to shed light on the lack of humanity shown toward young people. The right hand boarded window in the collage shows how young children were systematically impacted by unethical medical studies at Willowbrook, I left the middle area of this right sided boarded window empty in order to symbolize the voided space of unheard voices of victims affected by Willowbrook.

Now, as I think of Willowbrook and all the countless mistakes that were made there, I am reminded that we, as educators and bioethicists, are called to serve those in greatest need, to right the wrongs of the past, and to go forth with the greatest promise of our calling.

Photo by Feliphe Schiarolli on Unsplash

Article Details

willowbrook, humanity, collage, disabled, disability, mentally disabled, mental health, children, vulnerable, Black, African-American, ancestors, unethical, medical

Anekwe , O. . (2015). Unheard Voices of Willowbrook. Voices in Bioethics, 1. https://doi.org/10.7916/vib.v1i.6324

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During the celebration of Rosh Hashanah (Jewish New Year) on September 25th, 2014, I conducted a daylong research endeavor at the Archives Office of the College of Staten Island in Staten Island, New York. My goal was to gather research information to prepare for a special education course presentation about the Willowbrook State School.

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How the Willowbrook Consent Decree Has Influenced Contemporary Advocacy of Individuals with Disabilities

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The Willowbrook Consent Decree was signed on April 30, 1975 by judge Orinn G. Judd. It enforced that the residents of the Willowbrook State School have the right to live in the environments that are as unrestricted as possible and have the right to free education,

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How the Willowbrook Consent Decree Has Influenced Contemporary Advocacy of Individuals with Disabilities

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How the Willowbrook Consent Decree Has Influenced Contemporary Advocacy of Individuals with Disabilities

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Geraldo Rivera, a reporter, created a documentary which showed the terrible conditions of the individuals in the Willowbrook school. After that, a class-action law suit was filed the same year where Willowbrook was forced to start closing procedures in 1975.

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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 [10]. 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 [9]. 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 [6]. Further surveys showed 90% of patients had markers for hepatitis A, indicating a previous infection [6]. 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 [3].

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 [1]. 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 [10]. 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 [6]. 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 [6]. 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.

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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.

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Although there was some criticism over his actions, after the Willowbrook experiment, Dr. Krugman went off to receive the Lasker Public Service Award, be elected as a member of the National Academy of Sciences, the Howland award, the Bristol award, the Immunization Award among others.

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After a stroke in 1991, Dr. Krugman recuperated for a while in Florida, but continued to spend time in his lab in New York. Saul Krugman loved his work, and reluctantly retired from the NYU faculty in September 1995, at the age of 84. He moved to Florida with his wife Sylvia, and suffered a second stroke in early October. On October 26, 1995, Saul Krugman died of a cerebral thrombosis. At the time of his death, NYU Department of Pediatrics Chairman Dr. Wade Parks said of Krugman, "Saul Krugman has done more to eliminate pediatric infectious diseases than any other person ever." Krugman's obituary in the New York Times read, in part:
He was a distinguished teacher, scientist and physician, respected by his colleagues and peers, and beloved by students. A national figure with an international reputation, he was the ideal of the physician and scientist. He combined the vast knowledge of pediatrics with the great abilities of an innovative and imaginative investigator to the enormous benefit to patient care.
Available in PDF:

NYU School of Medicine Memorial Service Program
Carol Krugman's remarks Scott Krugman's remarks Joe Dancis' remarks New York Times obituary Pediatric Infectious Disease Journal obituary

The Saul Krugman Collection is contains materials related to honors and awards received by Krugman, biographical records, career-related documents and objects, and documents and realia from Krugman's military service during World War II. Items in these categories include, but are not limited to: photos, articles, certificates/licenses, medals, plaques, programs, and correspondence. Materials are open to researchers by appointment.

For more information about this collection, please contact us using our Reference Request Form.

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Saul Krugman M.D. - Physician, Scientist, Teacher 1911-1995

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After a stroke in 1991, Dr. Krugman recuperated for a while in Florida, but continued to spend time in his lab in New York. Saul Krugman loved his work, and reluctantly retired from the NYU faculty in September 1995, at the age of 84.

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Education for All Handicapped Children Act and Bill of Rights Act

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Education for All Handicapped Children Act and Bill of Rights Act

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The Education for All Handicapped Children Act mandates that children receive free and public education tailored to their needs. The Bill of rights act of 1975 provided federal funding to support state programs for individuals with disabilities.

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The Individuals with Disabilities Education Act (IDEA) of 1975 represented a landmark effort to ensure equal educational opportunities for children with disabilities. Formerly known as the Education for All Handicapped Children Act, IDEA mandated that children with disabilities receive a free and appropriate public education tailored to their individual needs. This legislation was a critical step in moving towards inclusive education, recognizing the rights of children with disabilities to access quality education alongside their non-disabled peers. IDEA laid the foundation for subsequent advancements in special education and underscored the importance of accommodating diverse learning needs.

Developmental Disabilities Assistance and Bill of Rights Act (1975):

The Developmental Disabilities Assistance and Bill of Rights Act of 1975 aimed to empower individuals with developmental disabilities by fostering community integration and independence. This legislation provided federal funding to support state programs emphasizing community-based services, protecting the rights of individuals with developmental disabilities, and advocating for their inclusion in various aspects of society.

Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendments (1978):

The Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendments of 1978 underscored the commitment to comprehensive rehabilitation services. This legislation expanded the focus beyond physical rehabilitation, emphasizing employment, independent living, and community participation for individuals with disabilities. By promoting a holistic approach, the amendments sought to address the diverse needs of people with disabilities and enhance their overall quality of life.

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The Individuals with Disabilities Education Act (IDEA) of 1975 represented a landmark effort to ensure equal educational opportunities for children with disabilities. Formerly known as the Education for All Handicapped Children Act, IDEA mandated that children with disabilities receive a free and appropriate public education tailored to their individual needs.

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References formatted in APA format are included in the uploaded file