Key Research Cases in the United States
The following provides a brief history into a number of cases that raised ethical concerns and subsequently encouraged the establishment of guidelines on carrying such research. The following cases occurred at a time period when rules for human research was not as detailed as it is today.
Tuskegee Syphilis Study
Setting: Rural Alabama (1932-1972); strong myths about black sexuality as a contagion
What happened: The U.S. Public Health Service with the Tuskegee Institute conducted a study on the course of syphilis and a treatment program for African Americans. Six hundred black men took part in the study; those who participated received free medical exams, meals, and funeral assistance. Many were purposely infected with syphilis and were not given treatment for the disease even when penicillin was introduced in 1947.
Ethics: The men had not been wholly informed of the study's real purpose, lacked the necessary information needed to give informed consent, were not given the choice to quit the study, and were not properly treated. Ironically, this 40-year long study (initially projected to be 6 months) obtained limited results and knowledge.
Lead to: National Research Act (1974)
Willowbrook Hepatitis Study
Setting: Willowbrook State School; Staten Island, New York (1956-1972)
What happened: Rampant cases of hepatitis led to a medical study that involved intentionally infecting children with the hepatitis virus. Parents and students were not informed. This school was a state-supported institution for mentally handicapped children.
Ethics: Physicians believed that this study was ethical because the chances of infection as a student were high. The study began before a review committee for human experimentation was established. Ultimately, there was no real benefit from intentional infection; it would have been more practical and productive to study children who were naturally infected. The study also highlighted a type of coercion of participation in return for admission to the school.
Jewish Chronic Disease Hospital Study
Setting: Jewish Chronic Disease Hospital; New York City (1963)
What happened: To understand the process of human transplant rejection in the body, physicians injected live cancer cells in chronically ill , mostly demented patients who did not have cancer. The head of this project was Dr. Chester Southam, a renowned immunologist who became infamous due to other cases of injecting viruses in ill patients and in prisoners. Despite the scandals associated with Southam, he was revered by the medical field and was even elected president of the American Association for Cancer Research years later. He was not prosecuted for this case.
Ethics: The patients did not give their informed consent. Review of this study led to the censure of the principal partners, but this censure was then dropped.
Milgram Obedience Study
Setting: Yale University, New Haven, Connecticut
What happened: Psychologist Stanley Milgram designed a study to learn about disobedience and obedience and the willingness of those who follow harsh superiors. He asked volunteers to either be "teachers" or "learners." He instructed the "teachers" to give electric shocks of increasing intensity from mild to fatal to the unseen "learners" when they made mistakes. The shocks were not real.
Ethics: Milgram did not disclose the true study design to the volunteers (teachers). Although it did show insight on what drove people to exert pain on others, this study was unethical because it caused intense stress to those giving out the shocks.
