The damage from a series of unethical syphilis experiments on Southern black men may have reverberated far beyond the test subjects themselves, a new study has found.
The Tuskegee Syphilis Experiment was a government-run project from 1932 to 1972 in which hundreds of black men in Macon County, Ala., were deprived of a known syphilis treatment so that researchers could observe how the disease progressed. The tests were later widely condemned and President Clinton issued a formal apology for them in 1997. “Tuskegee” has also come to be a stand-in, historians say, for the centuries of abuse that African-Americans have suffered in the medical system.
The syphilis study was known in the medical community, but came into the public spotlight with front-page coverage in 1972 in the New York Times. That same year, the US Public Health Service halted the study. But its legacy carried on, according to a new analysis, which finds that after 1972, black men’s health suffered because they avoided doctors and died earlier than they would have been expected to. The authors claim that the Tuskegee revelation contributed to an eroded trust in doctors.
That finding “adds greater credibility to the conclusion that the Tuskegee Syphilis Study had an impact not only on the men directly involved, but on generations that followed,” said Stephen B. Thomas, director of the Center for Health Equity at the University of Maryland School of Public Health, who has been studying the legacy of Tuskegee since the early ’90s.
“There is an element of the shadow of the Tuskegee study still living today, and one of the ways of addressing it is to shine a light on that shadow,” Thomas said.
This is the first study to quantify the health impacts of Tuskegee, multiple researchers said. Other groups have studied other aspects of its aftermath — the Tuskegee Legacy Project, for instance, examined how knowledge of the experiments impacted individuals’ willingness to participate in research in the present day.
Those studies found no association between the two, but did find that blacks were more afraid of participating, researchers involved in the project said.
This new research incorporated numbers on mortality in the United States and trust in the medical system, measured by how often individuals visited doctors and their self-reported trust in a 1998 survey. The researchers also looked at how far away people lived from the site of the experiments.
The authors found that on average, from 1972 to 1988, American black men who lived to age 45 had a life expectancy of 1.4 years less than would be expected had the information about Tuskegee not been revealed. Black men also interacted less frequently with the medical system and were more mistrusting of doctors. The effects were more pronounced for men living closer to Macon County. Some of the effects were also more pronounced for men who were less educated. The study did not find the same effects for black women.
The study, which was published online earlier this week by the National Bureau of Economic Research, has not been peer reviewed. It is under the peer-review process at an economics journal, according to one of the authors.
Of course, other historical factors were occurring in the early 1970s. Historian Susan Reverby, a professor at Wellesley College who has written extensively about the legacy and impact of Tuskegee, pointed out that changes in economic policies, social support systems, and a major election all occurred at the time.
The study’s coauthor Marianne Wanamaker, an economics professor at the University of Tennessee, Knoxville, said that the study took this into account. “In order for these other changing factors to be a threat to our analysis, the impact of Nixon, fiscal crisis, etc., must only have affected older black men, differentially after 1972, and differentially as a function of their proximity to Macon County, Alabama,” she said.
Though the study is mainly backward-looking, Wanamaker said it has implications for medical practice in the modern day. “A natural extension of our work is understanding how to overcome mistrust and increase preventive care uptake among black Americans, as well as other minority groups,” she said.
To many, this isn’t news. Robert Fullilove, an associate dean at the Columbia University Mailman School of Public Health, pointed out that medical racism ran deep in the African-American community before Tuskegee.
Fullilove said that he agrees with the study’s conclusion that Tuskegee is associated with distrust of the medical system, but that the analysis only puts a number on something well-known in the black community.
“There have been tales circulating in black communities since we got to this continent about the dangers that one ran in the presence of physicians,” Fullilove said.
Reverby emphasized that Tuskegee is only one of many instances of racism in America, and that studies like this focus too much on trying to find the impact of particular events instead of focusing on how overarching racist structures — like access to jobs, healthcare, and good food — impact health.
This study “erases the structural reasons for the problem,” Reverby said.
