New paper sheds light on experience of Black prisoners in infamous Stateville prison malaria experiments

Yahoo

a day ago

Much has been said and written over the years about controversial malaria research conducted on inmates at Illinois' Stateville Penitentiary starting in the 1940s.
But at least one part of that story has been largely ignored until now: the role of Black prisoners in that research, which helped lead to the modern practice of using genetic testing to understand how individual patients will react to certain medications, according to the authors of a newly published paper out of the University of Utah.
'We want to highlight the stories of Black prisoners that participated in this prison research in the 1950s onward and give them their due,' said Hannah Allen, a medical ethicist and assistant professor of philosophy at the University of Texas Rio Grande Valley, and first author of the paper, which was published as an opinion piece Wednesday in the Journal of the American Medical Association.
'They haven't been properly acknowledged in the past, and their participation in these studies was really foundational in launching the field of pharmacogenetics and, later on, precision medicine,' said Allen, who recently completed her doctorate at the University of Utah.
Starting in the 1940s, researchers infected inmates at the Joliet-area prison with malaria to test the effectiveness of drugs to treat the illness as part of a U.S. military-funded effort to protect American troops overseas, according to the paper. A University of Chicago doctor was the principal investigator. The inmates consented to being part of the studies and were paid for their participation.
At first, the research was greeted with enthusiasm. In 1945, Life magazine ran a spread about it, featuring a photo of a Stateville inmate with cups containing malaria-carrying mosquitoes pressed against his bare chest. The first line of the story reads, 'In three U.S. penitentiaries men who have been imprisoned as enemies of society are now helping science fight another enemy of society.'
But as the years passed, attitudes began to shift. Questions arose about whether inmates could truly, freely consent to participate in medical experiments or whether they felt coerced into them because of their often dire circumstances.
At the Nuremberg trials, defense attorneys for Nazi doctors introduced text and images from the Life article about Stateville prison, though an Illinois physician argued at the trials that the prisoners in Stateville consented to being part of medical research whereas Nazi prisoners did not, according to the JAMA paper.
In the mid-1970s, news broke about a study at Tuskegee, in which Black men with syphilis went untreated for years — news that raised awareness of ethical problems in medical research.
News outlets also began publishing more stories about prison research, according to the JAMA article. The Chicago Tribune published an article in 1973, in which an inmate participating in the Stateville malaria research said: 'I've been coerced into the project — for the money. Being here has nothing to do with 'doing good for mankind' … I didn't want to keep taking money from my family.'
The experiments at Stateville came to a halt in the 1970s. A number of protections and regulations are now in place when it comes to research involving prisoners.
Since the 1970s, the Stateville research has often been discussed and analyzed but little attention has been paid to its Black participants, said James Tabery, a medical ethicist and philosophy professor at the University of Utah who led the new research, which was funded by the federal National Institutes of Health.
For a time, Black prisoners were excluded from the studies because of a myth that Black people were immune to malaria, Tabery said. Later on, once scientists had pinpointed the drug primaquine as an effective medication for malaria, they turned their attention to the question of why 5% to 10% of Black men experienced a violent reaction to the drug, according to the paper.
Ultimately, the scientists were successful, finding that the adverse reaction was related to a specific genetic deficiency.
'There are people all over Chicago today that are getting tested, that clinicians are recommending they get a genetic test before they get prescribed a drug because they want to make sure that their patient isn't going to have an adverse reaction to the drug,' Tabery said. 'It's really sort of powerful and interesting that you can trace that approach to doing good clinical medicine right back to this particular moment and place and population.'
But Tabery and Allen also found that the Black prisoners were not treated the same as the white prisoners who participated in research at Stateville.
For one, they weren't paid as much as the white prisoners, the rationale being that the white prisoners were infected with malaria, whereas the Black prisoners were given the drug but not infected with the disease — though some of the Black prisoners got very ill after taking the medication, according to the paper.
Also, researchers didn't protect the Black participants' privacy as well as they did for other participants. They published certain identifying information about the Black participants, such as initials, ages, heights and weights, whereas participants in the previous research were represented with case numbers, according to the paper.
Researchers also recruited the Black prisoners' family members for the study, which they didn't do with earlier participants, according to the paper.
'You see them just doing things with the Black prisoners that they're not doing with the white prisoners,' Tabery said.
Also, though scientists made an important discovery through the research on Black prisoners, the episode also highlights the difficulty that can occur in translating discoveries into real life help for patients. Though the World Health Organization now recommends genetic testing to protect people who are sensitive to antimalarials, many of the people who would benefit most from such testing still don't receive it because of financial barriers, supply chain issues and a lack of training, according to the paper.
'What we found is when you sort of shift to what was happening to the Black prisoners, these other lessons you hadn't thought of as being derivable from Stateville suddenly do become apparent,' Tabery said.