The Willowbrook State School Hepatitis Experiments (1956-1971)

Study Synopsis: The Willowbrook hepatitis experiments took place between 1956 and 1971 at the Willowbrook State School, a state-sponsored residential institution for children with physical and intellectual disabilities located in Staten Island, New York. During these experiments, researchers deliberately infected children with the hepatitis virus in an effort to study the disease’s transmission and potential methods of prevention. The experiments later became a notorious example of unethical medical research, sparking widespread public outrage and prompting major discussions on research ethics. The Willowbrook State School was ultimately closed in 1987 following years of criticism over the inhumane conditions and unethical practices that had occurred there.

Source: National Council on Disability’s website: www.ncd.gov

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This Zoom interview was conducted on January 2, 2026, by Meghana Wuppalapati, a ninth-grade student at Portola High School in Irvine, California, for her National History Day project. The interviewee was Dr. Obiora N. Anekwe, a bioethicist who specializes in research ethics and experimentation involving vulnerable populations. The discussion focused on the Willowbrook State School and its impact on modern-day medicine.

How has the Willowbrook incident influenced modern medicine?

The Willowbrook hepatitis experiments have had a lasting and significant impact on modern medicine, particularly in how vulnerable populations are protected within healthcare and research settings. The study involved the deliberate infection of underage children—many of whom were Black and Latino and living with disabilities—without fully informed consent and under deeply unsafe, unsanitary conditions. These children were malnourished, inadequately housed, and denied appropriate educational opportunities, compounding the ethical violations committed against them.

The public exposure of these injustices prompted widespread outrage and led to meaningful reforms. In response, stronger laws and protections were enacted, including the Developmental Disabilities Assistance and Bill of Rights Act of 1975 and the Education for All Handicapped Children Act of 1975, which established safeguards for individuals with physical and intellectual disabilities. As a result, modern medicine now places a far greater emphasis on patient rights, informed consent, and the ethical treatment of vulnerable populations—principles that were tragically absent at Willowbrook.

What impact do you think the exposé film (by Geraldo Rivera) had on public perception?

The exposé film had a profound and transformative effect on public perception because it forced viewers to confront the reality of Willowbrook through undeniable visual evidence. Seeing the children in real time—living in overcrowded, neglected, and inhumane conditions—made the abuse impossible to ignore. The film humanized the victims and exposed institutional neglect in a way that written reports alone could not.

Each time I show this film to my bioethics classes, students are stunned that what they are watching is real. The emotional impact is immediate and lasting. Even for me, the film remains deeply unsettling every time I view it. This demonstrates the power of visual media: when truth is presented honestly and courageously, it can shift public consciousness, inspire reform, and ultimately contribute to social change.

Why is it important for youth to know about this study?

It is critically important for young people to learn about the Willowbrook study because history has a tendency to repeat itself when its lessons are forgotten. This case is especially relevant to youth because the victims were children—young people not unlike themselves—who were denied the ability to opt out or advocate for their own well-being.

Learning about Willowbrook helps youth understand that they have inherent rights—rights they are born with, including the right to safety, dignity, and freedom from harm. It also teaches them that institutions, even trusted ones, have limits on what they are ethically and legally allowed to do to a person’s body. Awareness empowers young people to ask questions, assert their rights, and recognize unethical behavior before it escalates.

How do modern-day studies differ from Willowbrook?

Modern-day medical studies differ fundamentally from the Willowbrook experiments due to strict ethical oversight and regulatory protections. Today, all research involving human subjects must be reviewed and approved by an Institutional Review Board (IRB) before it can begin. These boards exist to ensure that studies minimize risk and protect participants—especially children and other vulnerable groups.

Additionally, informed consent is now a foundational requirement in medical research. Participants, or their legal guardians, must be fully informed about the purpose, risks, and procedures of a study before agreeing to participate. These safeguards are designed to prevent the kinds of abuses that occurred at Willowbrook.

Young people are encouraged to apply this mindset beyond research settings and into everyday healthcare. Asking questions—even during routine medical visits—is both appropriate and necessary. Your body belongs to you, and you always have the right to understand what is being done to it.