The word "Tuskegee" recalls one of the most shameful chapters in U.S. medical history, one that has inspired generations of mistrust.
What has come to be known as the Tuskegee experiment tracked the untreated progression of syphilis for decades in a group of African-American men who were told only that they were getting free health care from the U.S. government.
Today, African-American men have the worst health outcomes of all major ethnic, racial and demographic groups in the United States. The life expectancy for black men at age 45 is three years less than for their white male counterparts and five years less than for African-American women.
In a recently published working paper through the National Bureau of Economic Research, two researchers say this difference may have something to do with black men's mistrust of health care providers, possibly linked to the Tuskegee experiment.
The experiment began in 1932, when a group of government-funded researchers recruited 600 impoverished black farmworkers, the majority of whom had sexually transmitted syphilis, a bacterial infection that can result in blindness, dementia and death.
The men were given free health care, meals and burial insurance in exchange for participation in the study. But they were not told they were being studied for syphilis — they were told they were receiving treatment for "bad blood."
No truth, no treatment
The experiment was meant to last six months, according to the U.S. Centers for Disease Control. Instead, it carried on for four decades. By the mid-1940s, doctors knew they could treat syphilis effectively with penicillin. But the study participants were not told, nor were they treated. Instead, doctors allowed the disease to progress while they studied the effects. In some cases, the men died.
The study ended in 1972 after it was leaked to the press. "Tuskegee" became synonymous with flawed ethical standards. Public outcry helped facilitate a $10 million class-action settlement.
Tuskegee has never been forgotten.
Marianne Wanamaker, an assistant professor of economics at the University of Tennessee, and physician Marcella Alsan, an assistant professor of medicine at Stanford University, say pre- and post-1972 medical surveys show that the shocking news about the study lingered in people's minds and affected their decisions about health care for a long time afterward, influencing health care decisions even today.
African-American men with lower education and income levels showed the strongest tendencies to identify with the study subjects, and those living near Tuskegee were more likely to empathize with the study subjects than those who lived farther away.
"Other people have looked at differences in mistrust, and they have hypothesized many times that some part of that is due to Tuskegee," Wanamaker said. "What's different about this study is that we [used] the tools of economics — a field which looks for causal relationships rather than correlations."
What they found was that the more the men had in common with Tuskegee subjects, the less likely they were to get health care for chronic conditions.
Alsan said, "A big part of our story is about empathy and how much you actually identify with these gentlemen who were exploited."
While ethical standards have been put into place to make sure that such a lapse will not happen again — at least, not in publicly funded institutions — Alsan and Wanamaker's research shows that lack of trust in medical professionals can have a measurable effect on life expectancy.
"If people seem to be wary of things that seem so obviously beneficial — like getting tested for HIV or getting implants for contraception — maybe we should think about history a little bit more and think about why people might have certain beliefs, why they might have some hesitation," Alsan said.
Both researchers cautioned that their findings shed light on the men who responded to the government surveys they analyzed from 1972 and the years immediately following, but do not necessarily reflect the attitudes of younger African-American men today.
Wanamaker said that, as the daughter of a physician, she is aware that doctors still struggle with building trust with their patients. She said she found that troubling, but added, "I think many of us need reminding: This isn't paranoia. This is based in history."