June 11, 2025—The next time your doctor suggests that you take a genetic test before prescribing a drug, you can thank a group of Black inmates imprisoned outside Chicago 75 years ago. The story starts with malaria research using prisoners but has long been told as if no Black participants were involved at all. That tale is now being rewritten.
Much attention has been paid to malaria research conducted on inmates at Illinois' Stateville Penitentiary and the fraught ethical issues that the carceral studies raised. Stateville inmates were infected with the potentially fatal mosquito-borne disease from 1945 to 1974 to test the efficacy of various antimalarial treatments—part of a U.S. military-funded effort to protect American troops serving overseas.
The standard version of this history is that African-American prisoners were intentionally excluded from the infamous studies, based on the myth that Black people were immune to malaria.
University of Utah medical ethicists, led by philosophy professor James Tabery , are now shining a light on a buried part of the Stateville story in hopes of revealing how the prison experiments advanced medical science that benefits patients today, and which would not have happened were it not for the participation of Black inmates. The Utah research was funded by the National Institutes of Health and appears June 11 in JAMA (Journal of the American Medical Association).
The genetic basis of adverse drug reactions
Black inmates at Stateville were eventually brought into the malaria research in 1950—not to test antimalarials, but rather to figure out why the antimalarial drugs, such as primaquine, triggered dangerous adverse reactions in some people. This aspect of the Stateville research, in which at least 80 primaquine-sensitive inmates were studied, helped set the foundation for pharmacogenetics and " precision medicine ," the modern practice of tailoring medical treatment to individuals' genetic profiles, according to former Utah graduate student Hannah Allen , first author on the study and now an assistant professor of philosophy at the University of Texas, Rio Grande Valley.
This study explores the history of research funded by the U.S. Army and led by Alf Alving, a nephrologist with the University of Chicago. The toxicity studies overloaded the prisoners with primaquine and then documented what happened to their physical health. The Stateville researchers discovered up to 10% of the African American subjects experienced an acute hemolytic reaction.
"This is where the drug is essentially destroying the body's red blood cells at a faster rate than they are being produced," Allen said. "This occurs due to an enzymatic deficiency that makes metabolizing the drug difficult. It's incredibly painful. You have a decrease in oxygenation to your limbs and organs, so it causes cyanosis, nausea, fatigue. Some people's spleens failed, or kidneys started to fail, the urine becomes really dark."
The Stateville researchers shifted their focus to unearthing the basis for this primaquine sensitivity.
"That was the genuine mystery," said Tabery, a member of University of Utah's Center for Health Ethics, Arts & Humanities . "Why is it the case that certain people have this really awful reaction to these drugs and nobody else does? Trying to answer that question is what sets the stage for modern pharmacogenetics."
In 1956, Alving's team discovered the genetic basis of primaquine sensitivity boiled down to an inability to sufficiently produce an enzyme, known as glucose-6-phosphate dehydrogenase (G6PD), leaving the patient unable to combat oxidative stress triggered by exposure to the drug. The discovery was important because it told a clear genetic story behind a vexing health phenomenon and helped set the stage for avoiding dangerous drug reactions by testing people first to determine who might be sensitive.
Doctors now routinely administer genetic tests to their patients before prescribing certain drugs to decrease the risks of adverse reaction—a cardiologist who checks her patient's genetic profile before prescribing a blood thinner, or an infectious disease specialist who ensures their patient with HIV will tolerate abacavir. These preventive measures are direct pharmacogenetic descendants of what was learned from Black research participants at Stateville.
A proper acknowledgment of the prisoners
Setting up that pharmacogenetic revolution came at a cost to the Black prisoners involved, according to Allen and Tabery's research. In addition to the debilitating experience of the hemolytic anemia, the inmates' identifiable information was regularly reported in publications, family members were even recruited into the controversial studies, and they were paid less than the white prisoners.
"There was a clear difference between what the white prisoners and Black prisoners experienced in the research conducted at Stateville," they said.
Medical research involving prisoners—at Stateville and across the nation—was suspended in 1974 over ethical concerns centered on informed consent and coercion. The Stateville Penitentiary itself has been shuttered; the last inmates were moved out this year, and old cellblocks are planned for demolition.
Stateville was built in 1925 as a maximum-security prison with state-of-the-art panopticon structures where every cell could be observed from a central guard station. Its iconic roundhouse cellblocks became famous as sets in TV shows and major films, such as "Natural Born Killers" and "Bad Boys," and the prison was the subject of the 1961 documentary, " Life at Stateville: The Wasted Years ."
Because prisoner records are sealed for 75 years under Illinois state law, historians today are not able to identify the participants after 1950 except through contemporaneous press accounts, Tabery said. Those accounts focused largely on the white prisoners who were tested for drug effectiveness. Accordingly, the Black participants' identities remain obscured.
Still, Allen and Tabery are exploring other ways to properly acknowledge the role played by Black men in this transformational medical research—spotlighting the role of Black prisoners in museum exhibits about the history, and with science educators to develop lessons about pharmacogenetics oriented around the prisoner participants. As the JAMA publication concludes, "The medical community still has much to learn from what occurred at Stateville, and it is essential to recognize the participants—the people—who were at the center of it."
