It’s hard to fathom the depths of distrust that in the days of the COVID-19 pandemic have kept so many African Americans afraid to take advantage of a lifesaving vaccine. Public health outreach to these communities led to a Black nurse in New York being the first person in the country to receive the jab.
Captured on film, the historic event went viral around the world, serving to raise confidence and trust. By December 2021, 62 percent of Black Americans voiced confidence in the vaccine, a sharp uptick. Extensive public outreach in Black communities was one of the biggest game-changers in this regard, because there remain more than enough reasons for mistrust.
Watching a made-for-TV movie from 1997 may be able to help us understand why so many Black people today remain suspicious about medical treatment from majority-white hospitals and the government.
The Emmy Award-winning movie Miss Evers’ Boys starred Alfre Woodard and Laurence Fishburne, and was directed by Joseph Sargent from a 1989 play by David Feldshuh. It dramatized the true story of the secret Tuskegee Syphilis Study.
Beginning in Alabama at the Tuskegee Institute in 1932, and lasting into the 1970s, doctors routinely declined to provide treatment for African American men who were the subjects of medical experiments designed to investigate the disease. This, although a known cure existed within only a few years after the beginning of the study.
For 40 years, the Tuskegee Study ran as the longest-known experiment using human subjects that did not have a specific therapeutic goal in view. Under the pretext of actually treating their subjects, the United States Public Health Service and its colleagues never told the infected men participating in the study that they actually had been diagnosed with syphilis, a life-threatening sexually transmitted disease. Instead, the researchers used the term “bad blood” when speaking with patients.
40 Years of Exploitation and Deceit
All of the more than 600 participants in the study were male, and all were Black. All lived in rural parts of Alabama with little or no access to other regular healthcare. About two-thirds of the study participants already had syphilis, with the remaining 200 who were not infected serving as a control group.
None of the men were ever given the chance to make an informed decision about whether they wanted to participate in the “Tuskegee Study of Untreated Syphilis in the Negro Male,” as it was officially known. They were never told about the effects of the disease, or what to expect over the course of their infection.
Even after the development and widespread application of penicillin and other broad-spectrum antibiotics in the 1940s, the researchers did not change their plans for the experiment. The only “treatment” administered to the men infected with syphilis in the Tuskegee Study consisted of placebos, even when Alabama law specifically required treatment for those diagnosed with the disease.
The researchers basically continued to watch the men as the disease ran its course, waiting until their subjects died so that autopsies could be performed that would supposedly yield new data about the effects of untreated syphilis. Doctors have since noted that antibiotics likely would have significantly helped or saved many of the study participants.
The men were promised free medical care and transportation to see healthcare providers, and free hot lunches. They also were offered free caskets and burial insurance as an incentive for their families to agree to autopsies.
The Extent of Human Loss
By the year 1972, 28 of the men had died from the effects of untreated syphilis, with another 100 dead from complications related to the untreated disease. In the case of the many others who died of heart failure, researchers have been unable to definitively point to or rule out syphilis as the ultimate cause. But even those who survived often experienced lifelong physical and mental detriments, and their families were not spared. Syphilis is extremely contagious, and at least 40 of the men’s wives were reported to have contracted it, along with 19 of their children who were born with disease.
How did Tuskegee, a respected institution founded in 1881, with Booker T. Washington as its first teacher, reach such a low moral point?
Clinton, in his formal apology, called the study emphatically “racist.” It’s clear from the historical documentation that some of the researchers, both Black and white, were clearly conflicted. Some of them tried to give the men the best care they could under the circumstances.
But the majority of analysts and historians have concluded that, simply by allowing the study to proceed as it did, the medical authorities in charge viewed the lives of these poor Black men as disposable to the cause of medical science. It’s also clear that knowledge of its terrible costs led to measurably less trust in white-run medical institutions, and thus to reduced quality of health and lower life expectancy for Black people in the U.S.
Breaking the Silence
In 1972, with about 70 of the men still alive, the Associated Press ran a groundbreaking investigative report on the Tuskegee Study. The article, by reporter Jean Heller and based on accounts from Public Health Service whistleblowers, shocked the country. Senator William Proxmire of Wisconsin, one of many in Congress to express their horror, called the study “a moral and ethical nightmare” and urged compensation for the victims.
Only months after receiving broad public condemnation, the study came to an end. It provoked intense discussion among ethicists, doctors, and humanitarians regarding the appropriateness of using humans in medical research. Congress passed legislation requiring all researchers using human subjects in medical experimentation to obtain informed consent. A lawsuit from survivors later resulted in a $10 million out-of-court settlement.
In 1997, on behalf of the U.S. government, President Bill Clinton issued a formal apology, attended by five of the remaining eight survivors at the time. In 2004, Ernest Hendon, the last known surviving Tuskegee Study participant, died at age 96.