Unethical human experiments in the United States have been conducted for centuries. Out of several cases regarded human experimentations, there are two notable cases that changed the course of ethical principles of protecting human subject research forever, The Willowbrook Hepatitis Experiments and the Tuskegee Syphilis Study.
The Willowbrook Hepatitis Experiments
The Willowbrook Hepatitis Experiments began in 1955 and continued for 15 years. The scientist and investigator, Dr. Saul Krugman and his team began their work at the Willowbrook State School in Staten Island, New York, which housed mentally disabled children. During the mid 1950’s, hepatitis was prevalent at the Willowbrook State School which prompted Dr. Krugman to state that contracting hepatitis and infecting other children and staff it is inevitable due the unsanitary nature of the school itself and close proximity of infected peers (Dubois, J., 2008). He advised a well-designed study to differentiate the different strains of hepatitis and invent a vaccine that can protect against hepatitis.
According to Dr. Krugman, the purpose and rationale of conducting the research was to control the high prevalence of infectious hepatitis in the Willowbrook State School (Lemberg, D., 2018). However, during that time, hepatitis was already a public health problem. During the course of 15 years, Dr. Krugman and his team was able to successfully differentiate two strains of infectious hepatitis, Type A and Type B, along with developing a vaccine of gamma globulin to prevent hepatitis. Even though, their research was groundbreaking for the rest of medical science, to some, their methods were considered unethical and unjustifiable.
Dr. Krugman and his team experimented on mentally disabled children at the Willowbrook State School. More than 700 mentally disabled children were involved in the experiment. In one study, they had injected the experimental group of children with protective antibodies and did not inject the children who were considered the control group in which both groups were already infected with hepatitis, and then they just observed the children’s degree of immunity based on their symptoms (National Institutes of Health, 2009). In another study conducted by Dr. Krugman and his team, he injected 60 healthy children that were newly admitted to the Willowbrook State School. Dr. Krugman and his team did this for observation and to document the timelines and symptoms of contracting the hepatitis virus. According to Dr. Krugman, he reasoned that it was justifiable to study on mentally disabled children at the school because most of them would contract hepatitis eventually (Offit, 2007).
During the human experiments at the Willowbrook State School, Dr. Krugman and his team faced many criticisms on his methodologies of his research. In a series of letters that were published in a journal in regards to the ethical and moral nature of the experiment, “The Willowbrook Letters: Criticisms and Defense”, Dr. Stephen Goldby criticized Dr. Krugman and stated that it is morally wrong to perform any type experiments on children who were normal or a mentally disabled child when there are no benefit results for the child. Dr. Goldby also argued that institutions that housed certain type of children with disabilities should not be used for human experimentation and it is unethical and morally wrong. However, letters from Dr. Krugman stated in his defense that there were no additional risks for the children besides already being infected with the hepatitis virus. He also argued that the experimental subjects had informed consent from the parents to proceed with the experiment. Dr. M.H Pappworth included his letter as well to criticize Dr. Krugman. Dr. Pappworth argued that even with an informed consent from the parents, it is illegal unless it is in the interest of the child.
The Tuskegee Syphilis Study
The Tuskegee Syphilis Study is known for its unethical and malicious biomedical research in U.S History. In 1932, Macon County, Alabama, had the highest prevalence of syphilis in African American men. This was a time where there was no treatment for the venereal disease. The United States Public Health Service launched a research study on those men who were infected with syphilis also known at the time as “bad blood”. The purpose of this study was to observe the progression of those who were infected. The U.S. Public Health Service wanted to understand the disease through its natural course and also find a proper treatment for the subjects. Doctors who were in charge of the study collaborated with the Tuskegee University and started the conducted the study in 1932. (Reverby, (2009).
The U.S Public Health Service announced that this study will include free medical exams, free medication, free meals, and burial insurance. It was told that it would only last for a duration of 6 months. It actually lasted for 40 years. In this part of Alabama, poverty was high and most of the men have never been to a medical clinic before. At the announcement of this study and what it had to offer, 600 African-American men wanted to participate. According to the Center for Disease Control (2017), 399 men were already infected with syphilis and 201 did not have the disease. As the study went on, the men were only monitored by health workers and were given placebo pain medication such as aspirin for those who were infected and mineral supplements to those who weren’t. The men receive no therapy or promising medication to treat syphilis.
In 1947, penicillin was found to be the treatment recommended to cure syphilis. Even though, a drug for treatment was found, researchers who were conducting the study did not offer this new treatment to the study group. According to the researchers, no treatment was given because they wanted to track the full progression of the disease (Nix, 2017). For the duration of the study, 29 participants died from the actual disease, 100 more had died from syphilis related complications, and over 40 spouses had been diagnosed with syphilis and the infection was passed on to 19 children at birth.
In 1972, the Associated Press shared the story about the Tuskegee Study and it caused a public outcry. That eventually lead to Assistant Secretary for Health and Scientific Affairs to appoint an Advisory Panel to investigate the study. The panel found that the men had agreed to be a part of the study and was expected to be treated. The panel also found that the researchers did not inform them of its real purpose. The men were neglected care and treatment even after a cure was discovered. The study was stopped immediately by the Assistant Secretary for Health and Scientific Affairs. In 1973, a class-action lawsuit was born. Congress granted $10-million-dollar settle to those who are still alive and to heirs that were affected. From then on, guidelines were put into place in regards to protect human subjects in United States government funded research programs (Nix, 2017).