From 1932 to 1972 the U.S. Public Health Service (PHS) tracked the nonmedicated course of syphilis, a disease that is caused by the bacterium Treponema palladium, among 399 patients and 201 controls at Tuskegee Institute (now Tuskegee University). In the region around Tuskegee in Macon County, Alabama, the PHS, in conjunction with the county health department and the Rosenwald Foundation, initially began a survey and small treatment program for African-Americans with syphilis.
The study goals and research methods soon shifted in response to financial limitations, and the project became the longest nontherapeutic observational study on human beings in medical history, manifesting major violations of basic human rights and ethical precepts. The legacy of government-sanctioned refusal to treat syphilis continues to influence the reluctance of African-Americans and other ethnic minorities to participate in government-funded clinical trials, contribute to organ and tissue donation campaigns, support biomedical research initiatives, and be involved in routine preventive medical care programs.
Throughout forty years of untreated observations infected poor rural African-American men intentionally were denied effective therapy as their disease progressed. Indeed, the premise of the study entailed nontreatment until the participating men died and could be autopsied to document the effects of syphilis on their tissues and organs. U.S. government health professionals withheld the standard treatment for syphilis in the early years of the project, injections of arsenic-based salvarsan and topical applications of mercury or bismuth ointments; study participants never received clear advice about their disease state. When penicillin became the therapeutic agent of choice, study participants continued to be denied access to this known cure and their unremediated infections progressed.
Ongoing participation in the study by the men and their families was secured through the deception that they were receiving valuable medical care. Although the PHS provided the bulk of the medical personnel for this study, participant's primary contact throughout the years was with the Tuskegee-trained, PHS employed African-American nurse.
Permission for the study was obtained from key officials, including the U.S. surgeon general, the president of Tuskegee Institute, the medical director of Tuskegee Institute's John A. Andrew Hospital, and public health officials of Macon County. However, at no point were the basic human rights of the study participants protected. There was no voluntary, informed consent of the men under study and no opportunity to end the experiment at will, and the participants continued to be deceived throughout the study. The project, often called America's Nuremberg, reflected the convergence of scientific insensitivity and arrogance, racial injustice and dehumanization, and socioeconomic class–based duplicity in the victimization of the study participants.
Target participants in the study were syphilitic African-American men in the later stages of the disease. In these less contagious stages untreated syphilis still causes serious cardiovascular abnormalities, neurological disorders, blindness, and death in infected individuals. Lack of treatment through participation in the study caused 28 to 100 men to die, and it has been estimated that the withholding of medical care adversely affected 22 wives, 17 children, and 2 grandchildren who subsequently contracted syphilis. The impact of intentional nontreatment of the men who were studied on rates of offspring miscarriages, stillbirths, infant mortality, and infants born with serious syphilis-related mental and physical problems remains unknown. Additionally, the degree of infertility among women sexually affiliated with the study's untreated syphilitic men has not been quantified.
The study was continued at a time when Jim Crow racism and segregation dominated interethnic interactions in the American South and when patients with sexually transmitted diseases faced social and medical discrimination. In the United States syphilis was both a medical problem and a metaphor for immorality and indecency. The PHS study focused on a nonrepresentative cohort of poor, uneducated African-American men residing in a remote location. Their selection was compatible with the emergence of U.S. eugenic programs.
Syphilis historically had been a significant social scourge in much of the Western world; the development of effective treatments for treponemal disease increased public confidence in the capacity of science to develop innovative technological solutions for persistent social problems and suggested that this dreaded sexually transmitted disease could become rare. Tracking its natural history in an expendable group was for some people a "tolerable" breach of ethics.
The government study was exposed publicly in 1972. In 1997 U.S. President Bill Clinton apologized on behalf of the nation to the few surviving victims. Ten million dollars in lawsuit-generated reparations was distributed among six hundred study participants and their descendants in partial compensation for their suffering.
FATIMAH L.C. JACKSON
Jones, James H. (1993 ). Bad Blood: The Tuskegee Syphilis Experiment. New York: Simon and Schuster.