- Black Americans are twice as likely as white Americans to die from COVID.
- “The predominant scientists of the 19th century considered African Americans not fully human, not part of the human species,” says Harriett Washington, author of Medical Apartheid and Carte Blache.
- After decades of exploiting Black bodies, medical institutions must rebuild Black patients’ trust — starting with an open dialogue.
In the late 1990s, at the height of the HIV epidemic, Dr. Vanessa Northington Gamble gave a talk at the University of Illinois in which she explored why some African Americans believed that HIV had been deliberately propagated in Black communities. Gamble — now a professor of medical humanities at George Washington University — did not herself believe this was true. But the popular theory captured a powerful distrust of American medicine — one rooted in centuries of oppression, enduring inequities, and notorious experiments on Black bodies.
The truth, says Gamble, was more complicated than any deliberate introduction of HIV — but just as harrowing. Decades of institutional oppression meant that many African-American communities were especially vulnerable to HIV. They often lacked access to reliable healthcare, good schools, and stable housing, all of which affected their quality of health. Many did not have access to accurate information about the disease. Equally important, many Black Americans simply did not trust the American medical enterprise — with good reason. After centuries of abuse and exploitation at the hands of doctors, they often felt wary of government-funded resources for HIV treatment.
In 2021, as COVID vaccines become widely available, this skepticism lingers, with Black Americans reporting greater reluctance to receive the vaccines, even as they are twice as likely as white Americans to die from COVID. So what can the medical establishment do to earn Black Americans’ trust? Vanessa Gamble, Harriet Washington, and Rueben Warren discuss with Dr. Gounder the history of medical experimentation on African-Americans — and what a way forward might look like.
Centuries of wrongdoing
American medical malfeasance, even barbarity, dates back to slavery, when white doctors tested surgical techniques on enslaved people — without anaesthesia, let alone consent. Even after slavery was outlawed, a distrust of the medical system ran deep among Black Americans, with warnings of “‘night doctors’ [who] would take you to the hospital to experiment on you,” says Gamble — folk stories rooted in the very real 19th-century practice of digging up bodies from Black cemeteries at night and selling them to medical schools as cadavers for anatomy lessons.
After the turn of the 20th century, the exploitation of Black bodies simply took other forms. In 1932, 600 Black men were recruited to take part in a syphilis study run by the U.S. Public Health Service. The study’s aim was to monitor the effects of untreated syphilis on the human body. A placebo was given to all participants — even as safe and effective treatment became readily available, with the development of penicillin. If participants went to doctors who were not part of the study, administrators of the study made sure the men had no access to emerging treatments. Not only did the “Tuskegee Experiment” flagrantly violate research ethics; it was founded on the false notion that Black bodies were fundamentally, biologically different.
The study had tragic consequences. Left untreated, syphilis causes sores and ulcers, sometimes progressing to paralysis and neurological disorders. Many of the men died from complications of syphilis, and several wives and children came down with syphilis as well. Eventually, news of the study was leaked to newspapers, and public outcry pressured the government to shut it down. Survivors were paid $10 million in out-of-court settlements in the early 1970s, but another quarter-century passed before the government formally apologized.
The system fails, again
After the Tuskegee outrcy, federal guidelines were put in place to prevent non-consensual experimentation — but ethical lapses continued. Harriet Washington, author of Medical Apartheid and Carte Blanche, points to the PolyHeme study as a contemporary example of the unethical experimentation that has long jeopardized Black Americans’ health.
The study took place in the mid-2000s in about two dozen American cities. The goal was to observe how PolyHeme, an oxygen-carrying substitute for red blood cells, could be used in trauma patients when no fresh blood was available.
In all participating cities, trauma patients were automatically enrolled without their permission. “Not only there was no informed consent,” says Washington, “there was not even any simple consent. They simply put it on ambulances.” This was permitted by a 1996 law passed by the Food and Drug Administration, which held that informed consent was not necessary for emergency research.
The ambulances chosen for the PolyHeme study served areas that were predominantly Black and Hispanic, says Washington. The study continued for years in low-income communities. Though residents could, in theory, “opt out” by wearing a particular blue wristband, awareness of this option remained low — and once the supply of wristbands ran out, says Washington, they were unavailable for a year, even as the study continued. Worst of all, PolyHeme was not saving lives: Those who received the blood substitute were more likely to have a heart attack or to die.
Both the Tuskegee and the PolyHeme studies are examples of medical professionals’ mistreatment of people of color — and disregard for informed consent as a tenet of ethical practice.
The importance of trust
Now, with Black Americans voicing greater reluctance around COVID vaccines, some point to the importance of building “vaccine confidence” in communities of color. But the narrative of Black skepticism misses the point, says Washington, given this history of the medical establishment’s indifference and abuse.
“The real problem,” says Washington, “is the untrustworthiness of the healthcare system. If you don’t look at both of these factors — if you only look at African-American behavior — you’re pathologizing African Americans. The message then becomes, ‘It’s African Americans who are creating their own problems by refusing access.’ And that, again, is perpetuation of this old … tendency to blame African Americans for their own diseases. If we make a trustworthy healthcare system, then people will flock to it.”
We’re not there yet, says Washington. Thus far, signing up for vaccine appointments has often required computers, reliable internet, and transportation access — amenities harder to come by in low-income communities, where Black Americans are concentrated. Even seemingly neutral criteria — such as priority access for people over age 65 — end up favoring white populations. “African Americans and Hispanic Americans and Native Americans are all young populations,” explains Washington. This makes them less likely to land on high-priority lists favoring older Americans.
So how do we rebuild trust between African Americans and the public-health establishment?
Rueben Warren, a Professor of Ethics at Tuskegee University, offers one solution: “What if you shift the conversation from trust to trustworthiness?” he asks. Warren sees open dialogue with Black Americans as a key starting point, beginning with focus groups that prioritize Black perspectives. “You have to engage people in the beginning, in the middle and at the end, if you want them to benefit from the work that you’re doing,” he says.
Washington emphasizes the importance of consent, and points to Institutional Review Boards (IRBs) as one potential catalyst for change. IRBs are supposed to screen for any ethical concerns in studies involving human subjects. Washington suggests that half of IRB members be researchers and scientists, and half be people drawn from the subject pool itself. Gamble agrees that making IRBs more representative of subject pools could help instill confidence in medical studies — and perhaps begin to rebuild some Black Americans’ faith in public health.
Looking beyond IRBs, to the experience of participating in clinical trials, Warren points to the importance of safeguarding participants’ long-term health, ensuring “that if something … goes wrong — not in the clinical trials, not in the immediate response to the vaccination, but in the long term,” participants will have reliable access to care — regardless of whether they have health insurance. “Those kinds of assurances, I think, [say] to the population, ‘We’re concerned … not only about the vaccination, but about you as an individual.’” And when those agreements are broken, says Warren, there must be consequences. “If there are no consequences to behavior, be it intentional or unintentional,” he says, “then that is likely to repeat itself.”
Distrust of American medicine is nothing new, says Warren. Indeed, the wariness is as old as the risks and ravages of medicine itself. But perhaps the pandemic — another chapter in a long history of health inequities — can also offer an interval for change. “We know what to do,” Warren says. “The question is: Are we going to do it?”