3.7.5: Tuskegee Syphilis Study
Although many actions of U.S. government health agencies have attempted to improve health, some have in fact caused harm - particularly to vulnerable populations. In 1932, the United States Public Health Service (USPHS) began a 40-year study with the Tuskegee Institute - the first university for Black Americans which had been founded by Booker T. Washington in 1881. The original title of the study was “Tuskegee Study of Untreated Syphilis in the Negro Male” (renamed to: “USPHS Untreated Syphilis Study at Tuskegee”) and the purpose of the study was to investigate the progression of syphilis. Hundreds of African American men were recruited from rural Alabama for the study - nearly 400 with syphilis and a little more than half without - and were provided medical exams, food, and burial insurance. Eleven years later, penicillin became widely available and was quite an effective treatment for syphilis, yet it was not provided to the men in the study. Not only were the researchers not honest with the subjects on the purpose or details of the project when it began, they also withheld proven medicine when it became available, and allowed an infectious disease to spread to the subjects’ families.
It was not until journalist Jean Heller of the Associated Press broke the story in 1972 that a national outcry prompted a federal review of the study. An independent panel appointed by the Assistant Secretary for Health and Scientific Affairs concluded that the project had been unethical by not ensuring that the participants had given informed consent. (Informed consent refers to the full knowledge of the patient of the potential risks and benefits of a treatment, and their agreement to participate in that treatment with the understanding of these risks and benefits). Subjects of the Tuskegee study had agreed to the treatments at the beginning of the research, but were not made aware of risks of the treatments, the risks of transmitting syphilis to their families, nor were they given the choice to exit the study once penicillin became available. At a time when scientific racism was abundant, researchers took advantage of the poverty and lack of education in their study participants. The study was immediately halted (albeit 4 decades since it began) and a lawsuit awarded over $9 million to the victims and their families. Yet it wasn’t until 1996 that an official apology was made by President Clinton at the behest of the Tuskegee Syphilis Study Legacy Committee ( About the USPHS Syphilis Study , n.d.), ( Tuskegee Study - Timeline - CDC , 2023).