The Tuskegee Experiment Kept Killing Black People Decades After It Ended

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As Science of Us has noted before, trust in the medical establishment is really, really important. It’s important both because the medical Establishment (usually) makes a good-faith effort to provide people with solid, empirically supported health information in a manner that hucksters don’t, but also for a simpler reason: If people don’t trust doctors, they won’t go in for checkups or for care when they need it.

For a particularly grim example, take the Tuskegee experiment. That’s the subject of a recently published National Bureau of Economic Research working paper by Marcella Alsan, a public-health researcher at Stanford, and Marianne Wanamaker, a University of Tennessee economist. They summarize this “unethical and deadly experiment,” which they call “one of the most egregious examples of medical exploitation in U.S. history,” thusly:

For 40 years, between 1932 and 1972, the U.S. Public Health Service (PHS) followed hundreds of poor, black men in Tuskegee Alabama, the majority of whom had syphilis, for the stated purpose of understanding the natural history of the disease. The men were denied highly effective treatment for their condition (most egregiously, penicillin, which became standard of care by the mid-1940s) and were actively discouraged from seeking medical advice from practitioners outside the study. Participants were subjected to blood draws, spinal taps, and, eventually, autopsies, by the study’s primarily white medical staff. Survivors later reported that study doctors diagnosed them with “bad blood” for which they believed they were being treated. Compensation for participation included hot meals, the guise of treatment, and burial payments. News of the Tuskegee study became public in 1972 in an exposé by Jean Heller of the Associated Press, and detailed narratives of the deception and its relationship to the medical establishment were widespread. By that point, the majority of the study’s victims were deceased, many from syphilis-related causes. [citations removed, but you can find them in the text itself]

Since the experiment, the authors point out, various public-health researchers have noticed that when they interview African-Americans about their views on the health system, they will often bring up Tuskegee unprompted — it left a deep scar on the country, yes, but on this population in particular. Why should you trust doctors, and particularly white doctors, when the government can allow something this awful to happen?

Which raised an extremely depressing question for Alsan and Wanamaker, and one that no one had yet fully tried to answer: If you tried to measure the damage done not by the Tuskegee experiment itself, but by the aftermath, in the form of mistrust for the medical establishment, as news of it spread through various African-American communities, what would the results be?

To figure this out, the duo crunched a bunch of data from the General Social Survey (a big, comprehensive survey of Americans’ attitudes and behaviors that has been administered for decades), “health seeking behavior reported in the National Health Interview Survey,” and “detailed annual mortality data available by race, age group, gender and cause from the Centers for Disease Control and Prevention.”

The results, summed up in the paper’s abstract:

We find that the historical disclosure of the study in 1972 is correlated with increases in medical mistrust and mortality and decreases in both outpatient and inpatient physician interactions for older black men. Our estimates imply life expectancy at age 45 for black men fell by up to 1.4 years in response to the disclosure, accounting for approximately 35% of the 1980 life expectancy gap between black and white men.

That is pretty astounding — think about how a life-expectancy drop of 1.4 years translates across the millions of black men who have lived and died since then. And when you consider all the other factors that contribute to the life-expectancy gap between black and white men — all the factors that contribute to institutionalized racism and inequities in health and health-care access, basically — for a full third of that gap to be traceable back to the disclosure of the Tuskegee experiment is shocking.

Two other important details: One is that, as you may have noticed from the specificity of the “at age 45 for black men” phrasing above, the researchers did not find this effect among black women or younger black men. The researchers expected this, writing that “the mortality and healthseeking behavior of younger individuals is generally driven by acute conditions such as childbirth or trauma in which the needs for care are urgent and the benefits immediate.” If you’re about to have a baby, or you have sliced your head open, the urgency of the situation will likely outweigh your mistrust for doctors, in other words. Older people, who are more prone to chronic illness and a variety of preventable ailments anyway, are more likely to bear the brunt of the damage from mistrust in doctors. The researchers also “conjecture that the disclosure [of the experiment] had a stronger impact on the behavior of individuals who more readily identified with the study’s mostly illiterate black males subjects,” which could partially account for both the age and gender differences.

Second, the researchers found that the closer a given African-American male represented in this study was to Tuskegee itself, the more the likelihood they’d exhibit decreased life expectancy and/or increased mistrust of the medical system. Alsan and Wanamaker note that they’re not sure why this is the case, but that “geography may capture information spread through formal and informal networks or cultural similarity[.]” (Suffice it to say that geography mattered more in 1972, when the experiment was disclosed, than it would today, given the internet and social media.)

It’s worth pointing out that this is a working paper, meaning it hasn’t been peer-reviewed (though based on the acknowledgements on the front page, the authors got informal feedback from a small army of other researchers). And as with any other quantitative analysis of a complicated subject, it’s inevitable other researchers will pop their heads in and nitpick — there are tons of technical details in the paper’s PDF, for those with the appetite and expertise to dig through them. But the effects here are so large that it’s quite unlikely anyone will point to some flaw that topples Alsan and Wanamaker’s extremely depressing, important core findings.