William Carter Jenkins, a government epidemiologist who tried to call attention to and end the unethical Tuskegee Syphilis Study, died February 17 of complications related to an inflammatory disease. He was 73.
Run by the US Public Health Service, the Tuskegee Syphilis Study tracked the health of 399 poor black men being treated for “bad blood.” The men didn’t really have bad blood, but instead were infected with syphilis, weren’t told they had the sexually transmitted disease, and weren’t treated for it, though they were told they were being treated for their bad blood. The goal of the study, which ran from 1932 to 1972, was to understand long-term health effects of syphilis. Jenkins learned of the study in the 1960s, when he worked as a statistician at the Public Health Service in Washington.
A physician told him about the work, and he researched it, finding dozens of published articles, meaning the study was not a secret. Appalled by the lack of ethics in the study’s design, Jenkins spoke to his supervisor, who told him, “Don’t worry about it,” according to The Washington Post. The supervisor, it turned out, was monitoring the study.
Not satisfied with that response, Jenkins wrote an article about the study and shared it with a few doctors and journalists. Because the article did not include background information or other details, it went unnoticed, Jenkins’s wife, Diane Rowley, tells The New York Times. Another health service scientist ultimately exposed the study, which was then shutdown.
For Jenkins, the research and his inability to end it haunted him, according to The Washington Post. He went back to school to train as an epidemiologist, then worked at the Centers for Disease Control and Prevention (CDC) tracking syphilis cases first and then AIDS cases. He later worked to develop programs to ensure African American communities understood what AIDS was and how to prevent it.
“He was always a stalwart in making sure the research he was involved in was highly ethical,” Rowley tells The Post. “He got involved several times at CDC in objecting to planned studies, trying to make sure a study was not started, or was revised to the point where it would have a better, ethical approach.”
Jenkins was born in 1945 in South Carolina. As early as high school, he advocated for racial equality, helping to register black voters in the segregated South. He earned his undergraduate degree in mathematics from Morehouse College in Atlanta in 1967 and a master’s degree in biostatistics from Georgetown University in 1974. He then went on to earn a master’s degree in public health in 1977 and a doctorate in epidemiology in 1983 from the University of North Carolina. He then worked relentlessly to end racial inequality in research and build up the number of minorities in public health.
Jenkins was “an extraordinary leader in public health and a lifelong advocate for addressing racism in our society and eliminating health disparities,” Georges Benjamin, the executive director of the American Public Health Association, says in a statement. “He will be remembered for his unwavering nearly 50-year commitment to our nation and the world.”