Learn about the Willowbrook hepatitis study. Read about the background, results and criticism of the Willowbrook experiment on children at Willowbrook School on Staten Island.
Willowbrook Hepatitis Study | Background, Results & Criticisms
Table of Contents
- Hepatitis and the Willowbrook State School
- Willowbrook Experiment
- The Willowbrook Scandal
- Lesson Summary
Frequently Asked Questions
What was unethical about the Willowbrook experiment?
In order for parents to enroll their children in the Willowbrook State School, the parents were often required to give uninformed consent for their child to take part in the hepatitis studies. Students were intentionally infected with hepatitis, even though hepatitis is a potentially fatal disease.
What were the results of the Willowbrook study?
It was discovered that distinct types of hepatitis diseases exist, including hepatitis A and hepatitis B. It was also discovered that students experienced a milder infection if they received hepatitis antibodies before being infected with hepatitis.
Table of Contents
- Hepatitis and the Willowbrook State School
- Willowbrook Experiment
- The Willowbrook Scandal
- Lesson Summary
Hepatitis viruses are capable of causing liver infections. Common hepatitis symptoms include fatigue, nausea, and vomiting, and infections can be either acute (short-term) or chronic (long term). Although acute hepatitis typically resolves within a few weeks, chronic cases can lead to more serious health consequences, including liver cancer.
In 1947, an army hospital in the Willowbrook neighborhood of Staten Island, New York, was transformed into a school for children with intellectual disabilities. The school was named the Willowbrook State School, although the building was still occasionally mistaken as a hospital shortly after the school's opening. As a former hospital, the Willowbrook State School was a large brick building that contained ample space to both house and teach enrolled students. During its years of operation, the Willowbrook State School was one of the few institutions in the United States that enrolled students with intellectual disabilities.
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During the early 1950s, shortly after the opening of the Willowbrook State School, a hepatitis outbreak began to infect the enrolled students. Although the hepatitis infections spread naturally at first, controlled hepatitis studies were conducted on students beginning in 1956. The purpose of these studies was to gain more information regarding hepatitis infections, and potentially develop a hepatitis vaccine. Public pushback to the hepatitis studies, as well as other scandals that occurred in the school, led to the discontinuation of the studies in 1971.
Hepatitis A or Hepatitis B
Hepatitis A is highly infectious, and can be spread through casual contact with an infected individual or foodstuffs contaminated with infectious fecal matter. Hepatitis B spreads when the bodily fluids of an infected individual, such as saliva or blood, come into contact with an uninfected individual. Similar to hepatitis B, hepatitis C is also spread through blood-to-blood contact. Even before the Willowbrook hepatitis studies began, infections spread rapidly among the students enrolled in the school. The majority of these infections were from hepatitis A, likely because hepatitis A is transmissible from casual contact. The spread of hepatitis was additionally promoted by the unsanitary conditions of the school, which included contact of fecal matter between students. Despite unsanitary school conditions, staff at the school made few efforts to improve the hygiene of the students or building. Additionally, students who had been infected with hepatitis were difficult to distinguish from uninfected students.
The Doctors of Willowbrook ''Hospital''
Dr. Saul Krugman from the New York School of Medicine was a pediatrician and the principal investigator of the Willowbrook hepatitis studies. Dr. Krugman was assisted by Dr. Joan Giles and Dr. Robert W. McCollum. Dr. Giles was a professor of pediatrics at the New York University School of Medicine, and was responsible for informing the parents of enrolled students about the hepatitis studies. She also collected serum samples from the students involved in the studies. Dr. McCollum, a virologist with a PhD in public health, was responsible for determining how hepatitis spreads from person-to-person. These doctors justified conducting experiments on the Willowbrook students by claiming the information gained from the studies could be used to learn more about hepatitis viruses. Additionally, the doctors aimed to develop and test hepatitis vaccines during the experiments.
The Hepatitis Study Process at Willowbrook
Antibodies, proteins in the blood meant to neutralize invading diseases, were collected by the study doctors from students who had already experienced a hepatitis infection. The doctors hypothesized that hepatitis antibodies could be injected into uninfected individuals to help protect against future hepatitis infections. In order to test this hypothesis, one of the hepatitis studies performed at the Willowbrook State School involved students who had already been enrolled and living at the school. Some of these students were given an injection of hepatitis antibodies. The other students in this group were given an injection that did not contain antibodies, otherwise known as a placebo injection. Afterwards, the students were intentionally infected with hepatitis virus, regardless of if they had received antibodies. The infections were accomplished by either directly injecting the students with hepatitis virus, or by feeding the students chocolate milk mixed with hepatitis-contaminated feces. The students in the study were then closely observed in order to study the symptoms that developed. The students who hadn't received antibodies were the control group of the experiment - before being infected, they received no treatment that could potentially reduce symptoms or prevent infections. The students who received antibodies were the experimental group - if these students had reduced hepatitis symptoms, the study would serve as evidence that antibodies could be used to make successful hepatitis vaccines.
Another hepatitis study was conduced using students who were newly enrolled at the Willowbrook State School. In this study, all of the students were injected with hepatitis antibodies. Afterwards, some, but not all, of the students were intentionally infected with hepatitis using the same methods described in the study using already enrolled Willowbrook State School students. The objective of this study was to gather more data regarding if the antibody injections would prevent or lesson symptoms from a hepatitis infection.
Recruiting Willowbrook Experiment Subjects
While the parents of the children in the Willowbrook hepatitis studies gave consent for their children to participate in the study, granting consent was sometimes the only way parents could enroll their children in the Willowbrook State School. This is because the "hepatitis wing" of the school was often the only wing in the school with available space for new students. Additionally, few other schools would accept children with intellectual disabilities during the time frame in which the hepatitis studies took place. The enrollment of children in the hepatitis studies is an example of a Faustian bargain, or a phenomenon in which somebody violates their moral code in order to obtain a material gain. In this case, the parents of the Willowbrook State School students allowed their children to partake in experiments in exchange for enrollment at the school.
The Results of Willowbrook Study
The results of the Willowbrook hepatitis studies were published by Dr. Klugman in the New England Journal of Medicine, the Lancet, and the Journal of American Medical Association. The results of the studies led to two main conclusions.
Firstly, it was discovered that different types of hepatitis virus exist. Before the studies were conducted, hepatitis was thought to be only one disease. However, because the students in the hepatitis studies sometimes developed different symptoms, hepatitis A and hepatitis B were discovered to be separate diseases.
Secondly, it was discovered that students who had received an injection of hepatitis antibodies before being infected with hepatitis had milder symptoms than the students who did not receive antibodies. This information served as evidence that antibodies reduce the severity of disease, and the information was used to help further hepatitis vaccine development.
Criticism of the Willowbrook Experiment
The Willowbrook hepatitis studies have been criticized for violating principals of bioethics. Bioethics is a field of study concerned with maintaining morals and ethics in science and experimentation. One of the principals of bioethics is the maintenance of respect, justice, and human dignity during human experimentation. While vaccine development is a field of research that is not inherently unethical and is necessary to prevent disease and save lives, bioethics should be considered during experimentation.
In 1966, a medical ethicist named Henry K. Beecher published an article in the New England Journal of Medicine titled "Ethics and Clinical Research". This article promoted the idea of informed consent in human experimentation. Informed consent can only be given if the study participant, or the legal guardian of the study participant if the participant is a minor, has complete information regarding the benefits and risks of a study. Additionally, informed consent cannot be given if coercion is involved, and consent can be withdrawn at any time during a study.
Dr. Paul Offit, a pediatrician specializing in infectious disease and virology, criticized the Willowbrook studies with the reasoning that the students could have died by being intentionally infected with hepatitis. Karen Lebacqz is an ethics professor who also served as an original member on the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Commission is meant to protect human subjects involved in biomedical research, and Lebacqz claims human rights abuses during the Willowbrook hepatitis studies acted as a catalyst for the Commission's creation.
From 1965 to 1987, the Willowbrook State School was the center of a variety of scandals, uncovered by Robert F. Kennedy, Donna J. Stone, Jane Kurtin, and Geraldo Rivera. Senator Robert F. Kennedy observed that the school housed more students than its maximum capacity during his tour of the school. He also noted that both students and the the student living areas were filthy, and students wore tattered or improperly fitting clothes. Donna J. Stone, a children's advocate, reported similar observations during her visit to the school. Jane Kurtin publicly reported on the conditions of the Willowbrook State School after a protest was held by social workers and the parents of students. Geraldo Rivera, an investigative reporter, further confirmed the conditions of the school, and additionally revealed physical abuse of the students by school staff.
The Case Against Willowbrook
New York ARC v. Rockefeller was a court case stemming from a 1971 complaint filed by New York ARC, an organization representing individuals with intellectual disabilities, against the Willowbrook State School. New York ARC argued that the conditions of the Willowbrook State School violated the constitutionally guaranteed rights of the enrolled students. The case centered around the scandals that had been revealed to take place at the school, including concerns regarding school overpopulation, filthiness, and abuse. The judgement in the case demanded that proper toilet and bathing facilities must be provided to the Willowbrook State School students, as well as clean living facilities. Additionally, restrictions were placed on the use of physical constraints in order to reduce the risk of physical abuse, and experimentation on the students was banned.
The Stipulation in Staten Island
In 1987, the Willowbrook State School officially closed. This was due to the 1987 Stipulation, which aimed to relocate the former students of the school. The 1987 Stipulation was mandated by the United States Federal Court, which deemed the Willowbrook State School unfit for continued operation. The relocation of students enrolled in the Willowbrook State School was aided by the office known today as the Office for People with Developmental Disabilities. The Office assisted with the integration of former students into suitable group homes. By 1992, the majority of former students had been moved into group homes equipped to care for individuals with intellectual disabilities.
Hepatitis is a liver infection that can cause fatigue, nausea, vomiting, and in serious cases liver cancer. The Willowbrook State School, formerly a hospital, performed hepatitis studies on students with intellectual disabilities from 1956 to 1971. Before the studies began, many students at the school became naturally infected with hepatitis. The spread of hepatitis was due to unclean building conditions, as well as the school staff being unable to identify infected students. The objective of the studies was to observe the symptoms of infected students, as well as test if hepatitis antibodies are able to reduce the severity of hepatitis infection. During the study, either antibodies or a placebo were given to students. The students who received antibodies were the experimental group of the study, while the students who received a placebo were the control group. It was concluded that different types of hepatitis infections exist, and giving antibodies causes hepatitis infections to be milder. This information aided the development of a hepatitis vaccine.
Although vaccine development is not inherently unethical, the Willowbrook hepatitis studies neglected the principals of bioethics, which are meant to ensure the safety of humans involved in experimentation. Parents were often forced to give consent for their children to participate in the hepatitis studies, in order to enroll their child in the Willowbrook State School. Other scandals were reveled at the school, including unsanitary conditions, overpopulation at the school, and abuse. After the court case New York ARC vs. Rockefeller, the students at the Willowbrook school were moved to group homes by the 1987 Stipulation.
Video Transcript
Hepatitis & Willowbrook Background
Little was known about hepatitis in the 1950s, so when a school for disabled children in New York had a hepatitis epidemic, the New York School of Medicine led by Dr. Saul Krugman, decided to conduct studies involving the children. Much of what was done would be considered unethical today, but let's take a closer look at the experiments that were conducted, as well as the ethical issues.
Hepatitis is a term used to describe inflammation of the liver. There are different causes, many of which are viral. The Willowbrook experiments resulted in the discovery of two of the viral strains: hepatitis A and hepatitis B. Hepatitis A is caused from ingesting food contaminated by feces or from close contact with an infected person. Hepatitis B transmission is primarily through sexual contact or exposure to infected blood, such as from the sharing of needles.
Willowbrook School, located in Staten Island, housed children with mental disabilities. Hepatitis was a huge problem for students and staff at Willowbrook, with 30 to 50%, of students becoming infected, although this percentage has been contested. Because of the high rates of infection, Dr. Krugman decided to involve the children at Willowbrook in his studies.
Before the studies, it was thought that there were two types of viral hepatitis. There were some ideas on how each was transmitted. However, doctors were very limited on how to diagnose the disease.
Willowbrook Studies & Results
The studies began in the 1950s and lasted for 15 years. Children aged 3 to 10 being housed at Willowbrook were the subjects of the study. Dr. Krugman noticed that students who were infected with hepatitis recovered, and then appeared to be immune to future outbreaks of the disease. He decided to take antibodies from the blood of infected children and use them to try to create immunity, or protection, from hepatitis.
Antibodies are produced by the body in response to an infection, and they are part of the immune system's response to rid the body of diseases, like hepatitis. Dr. Krugman deducted that injecting uninfected students with the antibodies would jumpstart their immune system, resulting in a milder case of hepatitis once they were exposed. In addition, the antibodies would protect the children from future outbreaks.
Dr. Krugman's research involved 700 students that were divided into two groups. Group 1 involved students that were already housed at Willowbrook. Some of this group was given the protective antibodies and some was not. Group 2 involved students that were new to Willowbrook. All of these students were given the protective antibodies. Some students in this group were intentionally infected with hepatitis, obtained from sick students, and some were not.
Since some of the symptoms varied, Dr. Krugman learned that there were two forms of hepatitis (A and B). The students who had the protective antibodies and were purposely infected with hepatitis had mild symptoms compared to students who acquired hepatitis naturally and did not have the protective antibodies. This understanding paved the way for vaccinations for hepatitis A and B that are used today.
The Willowbrook Ethical Debate
There has been much debate on whether or not Willowbrook was ethical. Let's examine some of the arguments, starting with the unethical standpoint.
Mentally disabled children can't advocate for themselves or fully understand the risks involved in such a study. Furthermore, it's unethical to purposefully infect a person with a disease if that person doesn't understand the risks. The adults at Willowbrook weren't used in the experiment. Adults can consent and many of the adults at Willowbrook had contracted hepatitis. The way new students were recruited was questionable. Willowbrook was over capacity and denying admission in their general unit; however, they offered space in their 'hepatitis wing' if parents agreed to allow their children to enter the study. Parents who needed a place for their child had little choice.
Just because a student was enrolled in Willlowbrook didn't mean he or she would be infected naturally. Dr. Krugman may have exaggerated the rates of infection and suggested that students would be infected at the school no matter what, so being involved in the study wouldn't cause further harm. When researchers understood the mechanism for hepatitis transmission, they should have worked to clean up the school instead leaving it as is and using it as a means to find a vaccination. Uninfected students who were enrolling at the school shouldn't have knowingly been placed in an environment where they would contract hepatitis, either naturally or through purposeful exposure.
Defense of the Studies
Now take a look at the defense of the studies:
A greater understanding of hepatitis, including an understanding of how to protect people against the virus was achieved through the studies, the vaccination, and further understanding of viral transmission. Reduction in the rates of hepatitis at Willowbrook was achieved due to the study: 80-85% reduction in infections. The hepatitis at Willowbrook was a mild form, and no children died. Only the mild form was used in the experiment, so the risk was relatively low. The children involved in the study received special medical care and were observed closely. Parental consent was required, and accounts from the researchers suggest that the details of the studies were outlined, including infecting some with the disease.
While many suggest that Dr. Krugman should have cleaned up Willowbrook instead of experimenting with the children, advocates to the study suggest that the best solution for the hepatitis outbreak at Willlowbrook was to provide immunity to the children, which would be more effective than simply cleaning up the facility. In addition, dealing with the outbreaks was far more challenging than simply cleaning up. It was often difficult to determine who had the disease, thus difficult to isolate and prevent the spread of hepatitis.
Lesson Summary
Hepatitis, or inflammation of the liver, was the focus of a 15-year study that began in the 1950s at Willowbrook, a school for mentally disabled students located in New York. There has been much debate on whether the studies at Willowbrook were ethical. Take a moment to review the unethical standpoint and then the defense of the studies:
- Mentally disabled children cannot understand the risks of a medical study and therefore cannot give consent.
- The way in which students were recruited was questionable, as Willowbrook became full and then only offered space in the 'hepatitis wing.'
- Dr. Krugman overestimated the percentage of children that would be infected with hepatitis. Enrollment was not a guarantee of disease, as suggested by the researchers.
- Instead of using Willowbrook to experiment, Dr. Krugman should have cleaned it up to reduce the number of hepatitis cases.
And now for the defense of the studies:
- The information gathered at Willowbrook paved the way for two vaccines that are still used today.
- Dr. Krugman minimized risk to the children by using a mild form of the disease and providing specialized care for infected children.
- Parents were informed and the experiment was outlined for them.
- Simply cleaning up Willowbrook would not have stopped the spread of hepatitis. This study reduced the amount of hepatitis by 80 to 85%.
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