By: Jenika Packiaraj
(Photo Credit: National Archives, Atlanta, GA)
In 1932, the U.S. Public Health Services, in collaboration with Tuskegee University, recruited 600 impoverished African American men from Macon County, Alabama, to study untreated syphilis. In return, the participants were offered free medical care. The Tuskegee Experiment was only meant to be a 6-month study, but it instead turned into a 40-year scientific catastrophe that would impact attitudes toward healthcare in Black communities for decades after its end.
Flawed Foundations of the Study
The Tuskegee Experiment was based on a fundamentally flawed scientific understanding of race that was prominent in the early 20th century. Due to the harmful widespread belief that African-American men had over-developed genitals and insatiable sexual desires, the researchers assumed that Black men were more prone to sexually transmitted infections like syphilis.
Additionally, the USPHS researchers believed that Black people, regardless of education or socioeconomic status, could not be convinced to get treated for syphilis. Instead of calling it an experiment, the USPHS justified the Tuskegee study as an observational “study in nature,” using a population they believed would not seek treatment. The underlying racist assumptions of the study would form the foundation for the unethical practices committed by the USPHS for the next 40 years.
Unethical Practices for 40 Years
Of the 600 African American men participating in the study, 399 men had latent syphilis and 201 were recruited as controls. However, the participants with the disease were not told that they had an infectious disease. Instead, they were told they were being treated for “bad blood,” a colloquial term used to refer to a variety of ailments including anemia, syphilis, fatigue, and more. This deadly deception that began the experiment would later lead to participants unknowingly passing the infection on to their wives and children.
While there was not a known cure for syphilis when the study began, the researchers actively blocked participants from getting any treatment or official diagnoses on multiple occasions. For instance, they provided a list of the subjects, along with explicit instructions not to treat them, to all doctors in Macon County in 1934 and to the Atlanta Health Department in 1940. The researchers also prevented the men from being drafted into the Army in 1941 so that their syphilis would not be revealed by the entrance medical exam.
By 1947, penicillin was commonly accepted as a treatment for syphilis, and the USPHS even opened up syphilis treatment centers. However, the researchers still did not treat participants of the experiment and even blocked participants from gaining access to penicillin. They justified their continuation of the study by saying that the Black subjects would not seek treatment due to their “stoic” nature. However, the real reason why they did not seek treatment was because the researchers had falsely told them that they were already being treated. Even as late as 1965, after the death of many subjects, the researchers refused to treat subjects with penicillin by claiming it was too late to treat them successfully, even though penicillin was approved for treatment at all stages of syphilis. This egregious medical exploitation of Black men continued unbeknown to the public until 1972.
(Photo Credit: McGill)
Public Reveal and Subsequent Outrage
In July 1972, whistleblower Peter Buxton leaked information about the Tuskegee Experiment to the press. By this time, 128 participants had died of syphilis or related complications, 40 wives had been infected, and 19 children had acquired congenital syphilis. The article by the Associated Press was followed by massive public outrage and calls to end the study. Three months later, the advisory committee terminated the 40-year study, concluding that it was “ethically unjustified.”
In the same year, the NAACP filed a class action lawsuit against the USPHS on behalf of the participants, and in 1974, the lawsuit was settled for $10 million with an agreement to pay for the treatment of all surviving participants and infected family members. There are still 11 survivors that are currently receiving health benefits from the Tuskegee Health Benefit Program.
The horrendous exploitation of the subjects in the Tuskegee study also led to reconsideration of using human subjects in research. Congress passed the National Research Act in 1974, and the Office for Human Research Protections was established within the USPHS. In an effort to prevent future exploitation of human subjects, the law required informed consent from all participants for all research on humans within academia and hospitals, which would then be overseen by Institutional Review Boards.
The Tuskegee study severely damaged the trust of the Black community towards the American healthcare system, and this effect can still be seen today, almost 50 years after the experiment ended. In 1980, research showed that the public’s knowledge of the Tuskegee study had led to a reduced life expectancy among Black men over 45 by a year, especially near the site of the study. While this drastic effect is not seen in younger Black populations, there is recent evidence that knowledge of the Tuskegee Study has lowered the willingness of African-Americans to participate in medical research and access medical care.
Furthermore, the mistrust generated by the Tuskegee Experiment is continued by the inherent racial inequalities in the healthcare system that contribute to health disparities. The flawed pseudoscientific understandings of race that the Tuskegee researchers believed in 1932 are still reflected in the attitudes of healthcare workers and institutions towards Black patients, discouraging them from seeking necessary medical care. As the COVID-19 pandemic continues in the U.S., it is more important than ever to openly acknowledge the failures of the American healthcare system and scientific world to the Black community. Furthermore, it is critical to continue the fight against the very prejudices that have been embedded in the healthcare system and that have led to this persisting mistrust.
Tuskegee Study Timeline. (2020, March 2). https://www.cdc.gov/tuskegee/timeline.htm.
Newkirk II, V. R. (2016, June 17). A Generation of Bad Blood. The Atlantic. https://www.theatlantic.com/politics/archive/2016/06/tuskegee-study-medical-distrust-research/487439/.
Waxman, O. B. (2017, July 25). Tuskegee Syphilis Study: How Americans Learned What Happened. Time. https://time.com/4867267/tuskegee-syphilis-study/.
McVean, A. (2019, January 25). 40 Years of Human Experimentation in America: The Tuskegee Study. McGill Office for Science and Society. https://www.mcgill.ca/oss/article/history/40-years-human-experimentation-america-tuskegee-study.
Alsan, M., & Wanamaker, M. (2018). Tuskegee and the Health of Black Men. Q J Econ, 133(1), 407–455. https://doi.org/10.3386/w22323