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Willowbrook school was made for individuals with special needs. It was called a school, but with little to no education. It was designed to hold 4,000 patients but ended up having 6,200 patients. They were not treated with care, and almost just left in the institution to fend for themselves. It was such a bad environment that it eventually was shut down.

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Parents being told their kids are special needs

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Parents being told their kids are special needs

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In the beginning of this documentary of the Willowbrook Institution parents talk about how doctors told them their kids had mental issues. All the parents talk about how they didn't realize and saw them as your average perfect little kid. Doctors made sure it was known that they had " issues " and that led to how kids went into the institution because it was not normal to keep your child with special needs.

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Unforgotten: Twenty-Five Years After Willowbrook - Full Movie

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Dr.Krugman and his partner Dr.Giles wanted to see if there were multiple strains of hepatitis, and whether the vaccine could protect people from getting the disease. From 1955 to 1970 he gave children injections of hepatitis or gave them chocolate milk with the feces of infected children to test out all of their immunities to the disease. Dr.Krugman didn’t t see this as being wrong but thought he was helping the children and people in general by doing this test on children.

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Sixty years ago, a monstrous hepatitis experiment was performed on mentally disabled children at Willowbrook State School that raises serious ethical questions about vaccine challenge trials for Covid-19.

N ina Galen was ten years old when she became part of one of the most controversial human experiments in American history. Her mother, Diana McCourt, was looking for an institution that could care for her severely autistic daughter. "I was just desperate," McCourt says now, more than 50 years later. "I think I was having a breakdown because I was just trying to take care of everything."

McCourt finally settled on Willowbrook State School, a home for severely developmentally challenged children and adults on Staten Island, New York. In order to get Nina a spot at the overcrowded facility, however, she had to make a Faustian bargain-consenting to allow her daughter to be part of a quest to find a vaccine for hepatitis. "I had no choice," McCourt says, "I had tried so many different places and so many arrangements, and they didn't work out, so I went along with it."

Nina became one of more than 50 mentally disabled children, ages 5 to 10, under the care of Dr. Saul Krugman, a respected pediatrician from New York who wanted to determine if there were multiple strains of hepatitis, and whether a vaccine could be created to protect against the disease. Krugman and his partner, Dr. Joan Giles, used the Willowbrook residents to test a preliminary vaccine for this disease that had killed millions worldwide. From 1955 to 1970, the children were injected with the virus itself or made to drink chocolate milk mixed with feces from other infected children in order to study their immunity.

For much of human history, hepatitis caused some of the deadliest outbreaks in the world. The symptoms, including fever, liver damage and yellow skin, were written about by Hippocrates in the fifth century B.C.E. While we now know that there are multiple viruses (most famously, hepatitis A, B and C), in the first half of the 20th century researchers only knew of one form of the disease, which was then called epidemic jaundice.

Finding a vaccine became particularly important for the United States during World War II, when hepatitis outbreaks affected more than 50,000 American troops. To fight this disease and others, the Surgeon General's office established the Armed Forces Epidemiological Board.

School for Scandal: In addition to conducting hepatitis experiments, Willowbrook's staff physically abused residents.

In the early 1950s, Dr. Krugman, a former flight surgeon for the U.S. Army Air Corps, went to the Epidemiological Board with a proposition: he wanted to create a vaccine for hepatitis, and knew the perfect place where he could do his research. Willowbrook was overcrowded, already rampant with disease, and at the time it wasn't uncommon to test vaccines on children.

The idea goes back to the grandfather of vaccines himself, Edward Jenner, who used an 8-year-old boy as the first test subject of his groundbreaking smallpox vaccine in the late 18th century. The Willowbrook hepatitis experiments would be vaccine challenge experiments, so-called because the body is intentionally "challenged" with a direct exposure to the virus to see if a particular treatment prevents someone from getting the disease.

"He believed he was helping the children at this school deal with the epidemic," says Dr. Krugman's son Richard, a pediatrician at the Children's Hospital Colorado and former head of the U.S. Advisory Board on Child Abuse and Neglect. "He certainly thought he was making a contribution to infectious disease research."

Although there's little doubt that Dr. Krugman accelerated the discovery of a hepatitis vaccine, the ethics of his experiment have resurfaced as vaccine challenge trials are being debated for Covid-19. Many politicians, medical ethicists and scientists have come out in favor of the idea, which would include giving healthy volunteers a dose of an unproven vaccine, and then deliberately exposing them to Covid-19 to see if it offers protection against the virus.

While the vaccine challenge trials would be done with healthy adult volunteers, the Covid-19 vaccine challenge trial and the Willowbrook hepatitis experiments beg the same question: Is it really necessary-or right-to risk the health of a few for the benefit of many?

S aul Krugman arrived at the bucolic Willowbrook campus in 1955. Nestled on almost 400 acres on Staten Island, the large, U-shaped brick buildings were surrounded by a lush green forest. A painted yellow and blue carousel sat at the entrance to the grounds, and first-time visitors described it as enchanting, like a summer camp. Inside, however, Willowbrook was a nightmare.

Do No Harm: RFK described Willowbrook's conditions as "less comfortable and cheerful than the cages in which we put animals in a zoo."
Bob Adelman

The school opened in 1947 and was built to hold 4,000 residents, but for years that number was over 6,000. Disease and neglect were everywhere, and multiple residents died from untreated illness and abuse. In 1965, Robert F. Kennedy, then a New York Senator, made an unannounced visit to Willowbrook and left appalled. "There are no civil liberties for those put in the cells of Willowbrook," he later testified before Congress, calling the institution a "snake pit."

When Dr. Krugman and Dr. Giles began the Willowbrook hepatitis experiments, they used the conditions of Willowbrook to their advantage for recruiting new families. Despite its well-documented horrors, Willowbrook was still one of the only options for children with severe disabilities, and there was a long waitlist. Dr. Krugman offered several parents, including Nina Galen's, the ability to jump the line and have their children put in the newer, cleaner research wards with more staff-if they joined the experiments. "I did feel coerced," McCourt says, "I felt like I was denied help unless I took this [opportunity]."

Krugman also told parents that since hepatitis was already prevalent at Willowbrook, their children may as well have the chance for a vaccine. McCourt remembers being told her daughter could get an "antidote" to hepatitis if she joined the experiment. When she asked why the hepatitis studies couldn't be done on primates, she was told that using animals would be "too expensive."

Despite understanding the optics of infecting mentally disabled children with a potentially deadly disease, Dr. Krugman felt the risk was worth the reward. "The decision to feed hepatitis virus to patients at Willowbrook was not undertaken lightly," he wrote in a 1958 paper published in the New England Journal of Medicine. He noted that the strain of hepatitis in Willowbrook wasn't very severe, that many of the children would get infected anyway, and that any knowledge gained from the experiment would in fact help other Willowbrook residents. He also emphasized that the study was sanctioned by the New York State Department of Mental Hygiene, and the Armed Forces Epidemiological Board of the Surgeon General's Office.

"I don't think you're ever justified to inoculate a child with an infectious virus that might kill them," says pediatrician Paul Offit.

Some of Dr. Krugman's trials built on previous research that giving children antibodies from patients who had recovered from hepatitis could prevent new infections. (A similar concept, using convalescent plasma of recovered Covid-19 patients to treat sick patients, is being explored today.)

The experiments also involved infecting healthy children with the virus through the chocolate milk concoction. The doctors eventually learned how much it took for the children to show symptoms of hepatitis, allowed them to recover, and then gave them the virus all over again. These experiments were done to test if someone who had recovered from hepatitis would remain immune or if they could be reinfected again.

As each trial concluded, Dr. Krugman published the results in prominent medical journals including the New England Journal of Medicine, the Lancet, and the Journal of the American Medical Association. From the time of the first publication, the experiments were controversial within the medical community. In 1966, renowned medical ethicist Henry K. Beecher published an article titled, "Ethics and Clinical Research," which listed Willowbrook as an example of an unethical clinical experiment and concluded that "there is no right to risk an injury to one person for the benefit of others."

Five years later, the editorial board of the Lancet apologized for publishing Dr. Krugman's studies without greater skepticism. "The Willowbrook experiments have always carried a hope that hepatitis might one day be prevented," the editors wrote, "but that could not justify the giving of infected material to children who would not directly benefit." A year later, Krugman had to ward off protesters at a medical conference in Atlantic City.

Bad Form: Willowbrook often accepted children in exchange for parental permission to conduct hepatitis testing.
The College of Staten Island Archives and Special Collections

"I think he got a lot of flak for it from people who didn't understand the context or the reality of the institution," Richard Krugman says. "It certainly got caught up in the politics of the day."

But Dr. Krugman had as many fans as he did detractors. New York State Senator Seymour Thaler, originally a critic of the hepatitis experiments, later said that Krugman had "done a magnificent thing." Dr. Franz Ingelfinger, a former editor of the New England Journal of Medicine, also supported the research. "How much better to have a patient with hepatitis, accidentally or deliberately acquired, under the guidance of a Krugman than under the care of a zealot," he wrote.

In addition to discovering the hepatitis A and B strains, Dr. Krugman "certainly did speed up the development of a hepatitis B vaccine," says Paul Offit, a pediatrician and director of the Vaccine Education Center at The Children's Hospital of Philadelphia. But, Offit adds, "I don't think you're ever justified to inoculate a child with an infectious virus that might kill them."

As members of the medical community protested Krugman's experiments, a greater force was mobilizing to close down Willowbrook for good.

In 1972, Geraldo Rivera, then a local television reporter in New York, snuck into the grounds of the school and broadcast the inhumane conditions of Willowbrook. He had been tipped off about the residents' living conditions by Michael Wilkins, a doctor at the school who was not involved in the hepatitis trials.

"It's almost 50 years and speaking about it still makes me cry," says Rivera, now a roaming correspondent-at-large at Fox News. "The conditions were so horrible." Rivera remembers seeing children naked, smeared in their own feces and hitting their heads against the wall. "I would imagine that the situation I had was similar to the GIs that freed the concentration camps."

The Last Great Disgrace: As a result of Geraldo Rivera's 1972 investigation of Willowbrook, a federal law was passed to protect people in institutions.
Michael Ochs/ GettyImages

At roughly the same time, a whistleblower exposed the infamous Tuskegee syphilis study in which researchers deliberately let hundreds of Black men go untreated and several died from the disease, even though there was a known cure. Willowbrook was one in a long line of human experimentations on children, prison inmates, people in mental health facilities, and minority communities, and Tuskegee was the tipping point.

Dr. Krugman, however, was rewarded for his work at Willowbrook. That year, he became president of the American Pediatric Society.

In 1974, the National Research Act was passed in an effort to create regulations that protected subjects in human research trials. One measure it implemented was the creation of an ethics task force, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. "The National Commission might never have come into being were it not for Willowbrook and Tuskegee and several other instances," says Karen Lebacqz, one of the original members of the commission.

By 1979 the commission had published the Belmont Report, a comprehensive guideline of basic ethical principles that guide modern clinical trials. The National Research Act also established the practice of Institutional Review Boards (IRBs), independent committees that must take time to review the ethical aspects of human clinical trials to this day.

A side from potential ethical dilemmas, today's coronavirus vaccine challenge trials have something else in common with the Willowbrook hepatitis experiments: they may not even be necessary. While Dr. Krugman is credited for speeding up the development of a hepatitis vaccine, other researchers were not far behind. In the late 1960s, Dr. Baruch Blumberg independently discovered the hepatitis B virus, and together with Dr. Irving Millman submitted the first patent for a hepatitis vaccine in 1969. Blumberg did all his research by taking blood samples and testing the liver functions on children and adults who were already infected, and his work earned Blumberg a Nobel Prize for Medicine.

"Whenever people are desperate," ethics professor Karen Lebacqz says, "they always want to relax ethical standards."

Similarly, even if a challenge trial for coronavirus gets approved, there's no guarantee that it will lead to a faster vaccine development. The U.S. government's initiative to develop a coronavirus vaccine may be called "Operation Warp Speed," but Christine Grady, Chief of the Department of Bioethics at the National Institutes of Health Clinical Center, says that a lot of time and thought have to be put into properly designing a trial.

"Whether or not doing a challenge trial would even speed up the trial is a question that is not exactly clear," says Grady, who is married to Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases. Paul Offit agrees. "You have to have the right dose. And to get the right dose, you have to have these mini-challenge trials," he says. "I don't think it's going to happen."

Karen Lebacqz, one of the original Belmont Report authors, also has concerns about the accelerated Covid-19 vaccine protocols. "Whenever people are desperate," she says, "they always want to relax ethical standards."

Saul Krugman's controversial experiments at Willowbrook were only the beginning of his illustrious career. He later became the head of pediatrics at New York University School of Medicine, was elected to the National Academy of Sciences, authored a classic textbook of pediatric infectious diseases, received the prestigious Lasker Award, and helped to develop the first rubella and measles vaccines.

He defended the Willowbrook trials his whole life, writing in 1986, "I am as convinced today as I was at that time that our studies were ethical and justifiable." Krugman passed away in 1995, and his obituary in the New York Times has only a small mention of his experiments at Willowbrook.

To this day, while many modern-day ethicists use the Willowbrook studies as an example of unjust human experimentation, there are always second opinions. "It's complicated," Grady says. To her knowledge, "Krugman's first goal was to understand the disease...but I think there are some things about it that certainly don't look good and would be hard to get approval today."

Mike Wilkins, the Willowbrook doctor who helped organize parents to shut down the institution in 1987, also doesn't think that the experiments are black-and-white. "I'm not wanting to crucify Krugman," he says now, "hepatitis B, for God sakes, is an international disease that there's now a vaccine for. But let's never ever do that again."

Cover images from left: Coventry Telegraph/Getty Images; Frank Leonardo/The New York Post/Getty Images; Lasker Foundation.

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The Hideous Truths Of Testing Vaccines On Humans

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Sixty years ago, a monstrous hepatitis experiment was performed on mentally disabled children at Willowbrook State School that raises serious ethical questions about vaccine challenge trials for Covid-19. N ina Galen was ten years old when she became part of one of the most controversial human experiments in American history.

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Geraldo Rivera Snuck into the institution through a back door. While he was there he saw people not clothed, sitting in their own feces, and being unattended. He stated that inside it smelled of filth, smelled of disease , and smelled like death. There was no training happening at all. The patients just sit there all day and do nothing with no care takers to even help them. Geraldo Rivera exposed what was actually going on in the instituition.

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Pennhurst was not unique. The conditions in which institutionalized people were forced to live were the same state to state, and institution to institution. In 1972 a young Geraldo Rivera exposed conditions at Staten Island's Willowbrook Hospital to a shocked American public.

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Geraldo Rivera's 1972 expose of Willowbrook State School

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Bernard Carabello was in the Willowbrook Institute from age 3 to 21. Since he lost so many valuable years of life he decieded he needed to do something about it. So, he spoke up with Geraldo Rivera and others to expose the institution and the horrible things they were doing. Bernard created a program called "Sanys". So he became a self advocate for people who are scared to use their own voices and be heard.

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The Self-Advocacy Association of New York State was founded in 1986 by Bernard Carabello, a former resident of the Willowbrook State School.

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She was a patient in Willowbrook for eight years. Doctors and specialist recommended to her parents to go to Willowbrook as a great opportunity for schooling. She had her parents support and came home every weekend. She would complain to her mom and her mom would confront doctors but no one would listen to her. Since there was not enough people to care for them the care givers made other patients help feed each other. Each patient had five minutes to shower a day like a prison. Personally Judy was beaten many times. Instead of Willowbrook teaching patients it almost made the patients forget whatever skills they have learned before going there. Judy said every day was the same it doesn't matter if a month passed or a year. The day she left Willowbrook she finally felt free and like she could finally start to have goals in her life. She will never forget the traumatizing time in Willowbrook.

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They knew that Rivera was coming to record inside the Willowbrook Institute. Since they knew they made care givers take patients on walks to hide how over crowded the facility is. Also they put new shower curtains, steamed the walls, cleaned the floors, and cared more about the patients there. One lady told them that the only reason they were cleaning is because they were coming to visit and record.

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The whole idea of shutting down the Willowbrook Institution happened when Senator Robert Kennedy made an unannounced visit in 1965. He said it was like “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.” This made people go crazy and wanted this place shut down. New York wasn't letting that happen and made a five year improvement plan. Then in 1972 Geraldo Rivera went and snuck into the Institute and recorded what was going on and that then lead to people wanted to shut it down again and eventually that happened.

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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.