Medical research has a long and complex history, with some studies raising ethical concerns and others leading to groundbreaking discoveries. One such case is the malaria research conducted on inmates at Illinois’ Stateville Penitentiary from 1945 to 1974. While much attention has been paid to the ethical issues surrounding these studies, a new study by University of Utah medical ethicists sheds light on a previously overlooked aspect of the research.
The standard narrative of the Stateville studies is that African-American prisoners were intentionally excluded, based on the false belief that Black individuals were immune to malaria. However, the new research reveals that Black inmates were eventually brought into the research in 1950 to investigate the adverse reactions some individuals experienced to antimalarial drugs, such as primaquine.
Led by philosophy professor James Tabery, the University of Utah team delved into the history of the research funded by the U.S. Army and led by nephrologist Alf Alving. The studies focused on understanding why certain individuals, particularly African Americans, experienced severe reactions to primaquine, leading to hemolytic anemia.
The researchers at Stateville discovered that the sensitivity to primaquine was linked to a genetic deficiency in producing an enzyme called glucose-6-phosphate dehydrogenase (G6PD). This discovery laid the foundation for pharmacogenetics and precision medicine, allowing doctors to tailor medical treatments based on individuals’ genetic profiles to avoid adverse drug reactions.
Despite the significant contributions of the Black prisoners to medical science, the research came at a cost. The inmates experienced debilitating health effects, and their identifiable information was published without consent. Additionally, they were paid less than white prisoners and faced unequal treatment in the studies.
While medical research involving prisoners was suspended in 1974 due to ethical concerns, the legacy of the Stateville studies lives on in modern medicine. Today, doctors routinely use genetic testing to prevent adverse drug reactions, a practice directly descended from the research conducted on Black participants at Stateville.
As the University of Utah researchers emphasize, it is essential to acknowledge the role played by Black men in advancing medical science. They are exploring ways to properly recognize the contributions of these individuals, such as museum exhibits and educational programs focused on pharmacogenetics and the history of medical research involving prisoners.
The new study published in JAMA highlights the importance of recognizing the participants at the center of medical research, even in cases where ethical concerns were raised. The lessons learned from the Stateville studies continue to shape medical practice today, underscoring the need to honor the individuals who were instrumental in advancing scientific knowledge.
