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,” such as the 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.
In fact, they 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 was the rough equivalent to the modern day Centers for Disease Control and Prevention (CDC).
The PHS researchers used Black community medical people and churches to do grassroots recruitment for “free healthcare.” In fact, they were essentially conducting a death watch to study the effects of untreated syphilis — even encouraging participants and families to agree to autopsies so they could study the bodies. There was a financial incentive to agree to autopsy that went toward burial services.
That macabre detail was made worse by the 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 World War II.
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
Astonishing in retrospect, in 1969, the CDC convened an expert panel to review the experiment — only to give the green light to continue it with the men untreated. It ended after being exposed by the press in 1972. Although 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
When the study began in 1932, approximately 400 Black males 25 to 60 years of age with syphilis were recruited, with about 200 without the infection designated as a control group. “By the time it was stopped in 1972, only 74 of the test subjects were still alive,” researchers report.3 “[Overall], 128 patients had died of syphilis or its complications, 40 of their wives had been infected, and 19 of their children had acquired congenital syphilis.”
A 2018 study found that disclosure of the egregious experiment in 1972 resulted in avoidance of medical care in older black men.4 “Although our study has focused on how Tuskegee generated mistrust and shaped demand for healthcare services by Blacks, the Tuskegee example also revealed racial inequities inherent in the provision of healthcare,” the authors concluded.
“I think what has happened is that many people, actually for the first time, have learned about the U.S. Public Health Service study at Tuskegee,” the AMA’s Maybank said at a CDC forum on empowering healthcare workers to be vaccinated against COVID-19.
African-Americans — even if they don’t know all the details — know the pain and betrayal that resonates after Tuskegee.
“They have the stories,” Maybank said. “They have the trauma that’s been passed down over generations. And they have those experiences of discrimination and exclusion and harm from our institutions.” Given this history, the goal shouldn’t be to “coerce” communities of color to be immunized, but make sure they can make an informed decision that they arrive at on their own, she said.
“People definitely have concerns — healthcare workers and their patients — have anxieties all around that,” she said. “Especially when people have power and systems have power. We know historically this power that goes across our society has been abusive sometimes, or oppressive, and this has produced harm and early death amongst Black, brown, and Latinx people.”
The result, borne out in polls of these communities today, is an entrenched distrust in medical institutions. “And this is really rooted in that false kind of hierarchy of human value that’s based on either skin color or wealth or gender — what country you’re from, what language you speak,” she said.
Healthcare workers of color are influenced by their communities and their historic messages, so they may have a degree of vaccine hesitancy even in medical settings, she explains.
“When it comes to approaches for empowering healthcare personnel, especially people of color, they don’t escape the history or cultural concepts,” Maybank said. “We are human beings. I think overwhelmingly that people who are in positions of leadership really need to better understand that context — that healthcare workers are not separate from their own communities.”
It is a good opportunity to explicitly engage employees in pandemic listening and planning sessions. There is a perception, for example, that the pandemic response has valued speed over equity, she said.
“Urgency without that prioritization of equity really prevents us from having these conversations that we need to have with our healthcare workers,” Maybank said. “And to learn from their real experiences with discrimination and racism, sexism, ableism, and xenophobia. Oftentimes, in the context of urgency, we will see an excuse given to overlook the realities.”
Speaking at the same forum was Kimberly Manning, MD, vice chair of the diversity, equity, and inclusion program at Emory University in Atlanta. Manning described herself as a “vaccine champion.”
“In my lived experience, I think a lot of it starts with who we are,” she said. “I’m a Black American woman, a descendant of slavery, whose family is from Alabama. I attended two historically black colleges, one of which is Tuskegee University. These conversations have been things that I have been hearing for my entire life.”
This background has enabled Manning to speak with credibility to communities of color.
“My first language, I would say, is African-American vernacular,” Manning said. “[I speak this way to] individuals around me, especially in downtown Atlanta where I work.”
These social interactions became an opportunity to bring up the pandemic vaccines with a simple question, “How do you how you feel about the COVID vaccine?” she said. “Not ‘Are you going to take it?’ Or ‘You need to take it,’ but ‘How do you feel about the vaccine?’” she said. “What I found is that it is not one size fits all. Specifically, as it relates to Black Americans, there’s a lot of heterogeneity in why people feel eager to get the vaccine and why [others] are not yet sure.”
In this way, Manning raises the vaccine profile, but is careful to humanize each individual and truly listen to what they say.
“‘[I’m] not doing the thing where you ask something and you’re plotting what you’re going to say next,” she said. “But to really start this habit of listening and engaging in unique ways. I think we can do that. It’s just not unique to me.”
Another speaker, Lauren A. Smith, MD, MPH, chief health equity and strategy officer at the CDC Foundation, concurred on this point. “I think, in order to build trust and to earn it, we have to [have] authentic listening and recognition — an acknowledgement and, frankly, a reckoning with the factors that have led communities of color to have such a disproportionate burden right now,” she said.
A vaccine-enabling environment for communities and healthcare workers needs both trust and confidence.
“If that environment has been poisoned or toxified by historic systemic racism or other adverse [events] it’s hard to grow,” she said. “And we’re seeing that come to the fore in the specific conversations around vaccines. Because people can see with their own eyes the inequities they or their family members experience within healthcare.”
They also know why they have an excess burden of COVID-19, because of the structural biases in healthcare, she added.
“We also have to ensure we’re in there for the long haul,” Smith said. “People in a community can tell when folks are parachuting in for a quick in and out — without any real lasting sort of investment or connection. We could do an even better job forcefully confronting the chapters in our history that have created this environment where misinformation can take hold.”
- Jones J. Bad Blood: The Tuskegee Syphilis Experiment — A Tragedy of Race and Medicine. The Free Press;1981.
- Thomas SB, Quinn SC. The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV education and AIDS risk education programs in the Black community. Am J Public Health 1991:81;1498-1505.
- McVean A. 40 years of human experimentation in America: The Tuskegee Study. McGill University Office for Science and Society. Published Jan. 25, 2019. https://www.mcgill.ca/oss/article/history/40-years-human-experimentation-america-tuskegee-study
- Alsan M, Wanamaker M. Tuskegee and the health of Black men. Q J Econ 2018;133:407-455.