In the annals of U.S. medical history, one study stands out for its profound impact on the ethics of medical research—the U.S. Public Health Service (USPHS) Study of Untreated Syphilis at Tuskegee and Macon County, Alabama.
Originally known as the “Tuskegee Study of Untreated Syphilis in the Negro Male,” the study began in 1932 in Tuskegee, Alabama–an area which then had the highest syphilis rate in the nation. The study was designed to chart the natural progression of untreated syphilis and determine through autopsies what damage untreated syphilis does to the human body.
To complete the study, the USPHS enlisted over 600 African-American men, each promised free medical exams, meals and burial insurance in exchange for their participation. Though approximately two-thirds of the men tested positive for syphilis, they were never informed of their status or told the true purpose of the study.
During the 1930s, treatment for syphilis consisted of doses of arsenic and mercury. But by 1947, four years after the 1943 Henderson Act made venereal disease tests and treatments publicly funded, penicillin became the standard syphilis treatment, leading to USPHS opening Rapid Treatment Centers around the country. Yet despite these advances, the men in the study were never treated as their health declined, many going blind or suffering cognitive decline or other severe complications.
In 1972 Peter Buxtun, a former USPHS venereal disease interviewer leaked information to the press, sparking a public outcry that led to termination of the 40-year study. A class-action lawsuit resulted in a $10 million settlement for the survivors and their families.
Participants in the Tuskegee syphilis study
Participants in the Tuskegee syphilis study
Participants in the Tuskegee syphilis study
But the Untreated Syphilis Study at Tuskegee and Macon County has had a lasting impact on the field of medical research, leading to significant changes in U.S. law and ethical standards for human subject research. The National Research Act was passed in 1974, establishing Institutional Review Boards (IRBs) that review and approve research involving human subjects. As a result, informed consent became a fundamental requirement in all research studies.
Despite these changes, the legacy of the study continues to reverberate in many communities, fostering an ongoing distrust of the medical establishment and serving as a powerful reminder of the vital importance of maintaining the highest ethical standards to protect human subjects.
Voices For Our Fathers Legacy Foundation leadership joined the CDC Foundation at the David J. Sencer CDC Museum for a tour
U.S. Public Health Service Study of Untreated Syphilis at Tuskegee Exhibit at the David J. Sencer CDC Museum
To honor the lives of those impacted by the study, the CDC Foundation is partnering with Voices For Our Fathers Legacy Foundation, a nonprofit organization made up of descendants of the men in the study, to create an endowed scholarship fund for future descendants. These Voices Today for Change Tomorrow scholarships represent an intentional commitment to move future generations forward and continually improve while remembering past inequities.
Our purpose is to transform the legacy of the longest-lasting, non-therapeutic study in U.S. medical history from shame and trauma to honor and triumph.
"By making a commitment to honor the legacy of these men, we are working to provide a stronger foundation of support for the next generation to build change," said Judy Monroe, MD, president and CEO of the CDC Foundation. “These scholarships are intended to amplify the voices of the next generation, allowing them to honor the life experiences of their ancestors while pursuing innovative solutions across their fields of study.”
Dr. Julie Morita, Lillie Tyson Head and Christopher Koller participated in a panel discussion for the Voices Today for Change Tomorrow Scholarship Fund
Dr. Judy Monroe made remarks at an event in celebration of partnerships for the Voices Today for Change Tomorrow Scholarship Fund
Together, Voices For Our Fathers Legacy Foundation and the CDC Foundation are working to change the narrative of the USPHS Study of Untreated Syphilis at Tuskegee and Macon County—reminding the world of the people and communities profoundly affected by this unethical study.
“Our purpose is to transform the legacy of the longest-lasting, non-therapeutic study in U.S. medical history from shame and trauma to honor and triumph,” said Lillie Head, president, Voices For Our Fathers Legacy Foundation. “We believe this scholarship fund and partnership demonstrate a new and lasting commitment to improving a health care system that provides everyone fair and equal medical care regardless of their racial and social status.”
The CDC Foundation welcomes individuals and funding partners to join us in building an endowed scholarship fund to support future generations of study descendants. To make a gift online, visit our donation page to support this important work. Please contact Helene Erenberg to discuss ways we can partner together on this important legacy scholarship program.
Photo Credit: National Archives at Atlanta, GA; Record Group 442: Centers for Disease Control and Prevention, Series: Tuskegee Syphilis Study Administrative Records, 1929–1972.
