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Gary Evans writes Hospital Infection Control & Prevention (HIC), Hospital Employee Health (HEH) and contributes to IRB Advisor (IRB). As senior writer at AHC, Evans has written numerous articles on infectious disease threats to both patients and health care workers, including pandemic influenza, MERS and Ebola. He has been honored for excellence in analytical reporting five times by the National Press Club in Washington, DC.
By Gary Evans, Medical Writer
The national dialogue on immunizing people of color against COVID-19 has brought past atrocities to light, forcing a conversation on the deep distrust engendered by government “medical care” like the infamous Tuskegee experiment.
“We have to understand that science has not always valued people,” said Aletha Maybank, MD, the chief health equity officer for the American Medical Association (AMA). “It has not always been trustworthy, and has actually exploited [them].”
Begun in 1932, the Tuskegee, AL, experiment studied — then unethically ensured — the progression of syphilis in hundreds of poor Black men for 40 years. The Black sharecroppers enlisted in the study were told they were being treated for “bad blood,” a catch-all diagnosis taken from the community vernacular.
They in fact were being followed for the progression of latent syphilis, a sexually transmitted disease caused by the bacteria Treponema pallidum. They were not told they had syphilis. Given the current situation with COVID-19 vaccines, it should be emphasized that the Tuskegee experiment was done by researchers with the U.S. Public Health Service (PHS), which at that time was roughly equivalent to what we now call the Centers for Disease Control and Prevention.
The PHS researchers insidiously used Black community medical people and churches to do grassroots recruitment for “free healthcare.” The transgression was compounded by the researchers refusal to treat the men with penicillin after it proved highly effective against syphilis in the late 1940s. Easily treated with antibiotics in the early stage, syphilis can cause blindness, brain damage, and a host of other maladies if left untreated. The PHS researchers even convinced the Army not to draft any Tuskegee participants when penicillin was first administered to soldiers in WWII.
There was an attitude among the PHS researchers that Black men did not merit ethical concerns as research subjects, with one saying in a 1976 interview that “The men's status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people.”1
The experiment finally ended after being exposed by the press in 1972. Though it led to public outrage, lawsuits, and widespread human research reform, Tuskegee’s real legacy is the infamy of being “the longest nontherapeutic experiment on human beings in medical history.”2
African Americans — even if they don't know all the details — know the pain and betrayal that resonates after Tuskegee, the AMA’s Maybank said recently at a CDC forum on empowering healthcare workers to be vaccinated against COVID-19.
“They have the stories,” Maybank said. “They have the trauma that's been passed down over generations. And they have those experiences of discrimination, exclusion, and harm from our institutions.”
Given this history, the goal shouldn’t be to “coerce” communities of color to be immunized for COVID-19, but to make sure they can make an informed decision that they arrive at on their own, she said.
For more on this story, see the next issue of Hospital Infection Control & Prevention.