In a paper titled, The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community”, written by SB Thomas and SC Quin was published in 1991.1 The title is self-explanatory, and though the paper was written nearly 30 years ago the issues of medical mistrust for African Americans exists not only for HIV but throughout healthcare in the United States. This Syphilis Study was conceived and proposed by the US Public Health Service (PHS) – now known as the Centers for Disease Control and Prevention (CDC) – to physicians and researchers at Tuskegee University.
The PHS proposed that Tuskegee would be accepting and effective due to their credibility with the Southern Black Community at the time. Also, this would not raise problems with white physicians. Tuskegee’s ties with the African American Community led to successful recruitment and retention for the study. Grassroots efforts, enlisting Black clergy, and community-recognized health professionals (including Eunice Rivers, a public health nurse) indeed contributed to the efforts to recruit and retain study participants. It was also during the Great Depression, making the incentives particularly appealing. Mark Smith, MD of Johns Hopkins stated during a congressional hearing in 1990, that the Tuskegee Syphilis Study “provides validation for common suspicions about the ethical even-handedness in the medical research establishment and in the federal government, in particular, when it comes to Black people” 1 (p 1499).
The so-called “Tuskegee Study” has often been identified by African Americans as proof of a government genocidal plot, along with crack and AIDS. Public health professionals and academes have struggled with the ethics and the implications for including African Americans in health awareness, prevention, and research. In the early 1990s, there was recognition that the HIV epidemic had clearly hit African Americans. There was widespread belief among Black Americans that HIV was another governmental genocide. In their paper, Thomas and Quinn compared the attitudes and beliefs related to the Syphilis Study to the HIV epidemic.
In 1996, journalist Gary Webb wrote about a drug triangle during the 1980s linking the CIA, a drug ring in San Francisco and a Los Angeles drug dealer. Within weeks, Webb’s report was discredited, but the story took hold, particularly in Black communities. The CIA’s suspect past made was seen as believable and true. African American leaders like US Representative Maxine Waters (Democrat – LA) stated that Webb’s articles as proof of a mastermind plot to destroy inner-city black America.2, 3,4
The COVID-19 pandemic presents an analogous situation. A quick search of the internet shows that there are naysayers and conspiracy theorists pushing the idea that Black people cannot get coronavirus. These stories can be found on different sites and platforms. One recurring story – and public disagreement – is about the opposing positions of music artist Cardi B and actor Idris Elba.5 To her comments about people getting tested or revealing COVID-19 positive status, Elba said,
“It shouldn’t be about whether the rich or poor gets it. Everyone should be able to get a test, for sure. I think the negativity around test-shaming is counterproductive. I don’t see what people get out of that and the idea that someone like myself is going to be paid to say I have coronavirus. That’s absolute bulls**t! Such stupidness. And people want to spread that like it’s news. It’s stupid. It’s the quickest way to get people sick.” 6
There are other popular Black celebrities have posited a more healthful approach, e.g., on 4/18/20, Blue Ivy (8 year-old daughter of Jay-Z and Beyoncé) posted a public service announcement about the importance of handwashing during which she demonstrates the proper technique and ended it saying, “So peace out, I hope you guys are staying safe. Wash your hands extra and please stay at home. Love y’all.”7
The Southern Christian Leadership Conference conducted a survey in 1991 to determine HIV education needs among 1056 Black church members in four Southern cities and Detroit: 35% believed that AIDS is a form of genocide and 30% were unsure; 44% believed that the government was not telling the truth about AIDS and 35% were unsure; 34% believed that AIDS is a manmade virus and 44% were unsure. That was nearly 20 years after AIDS was first identified by the CDC. Thomas and Quinn noted, “Blacks’ consequent anger and despair in the face of persistent inequality have contributed to the development of conspiracy theories about Whites (the government) against Blacks. These conspiracy theories range from the belief that the government promotes drug abuse in Black communities to the belief that HIV is a manmade weapon of racial warfare.”1 (p 1498)
The roots of this medical mistrust for African Americans are often attributed to reactions to the oft-called “Tuskegee Study”. This was supported by the US Public Health Service, known as the Tuskegee Study of Untreated Syphilis in the Negro Male. This lasted approximately 40 years (1932-1972) and involved the intentional deception and denial of treatment of the research subjects, as well as a promise to provide burial insurance. In 1973, it was determined to be “ethically unjustified” (CDC) by the Health and Scientific Affairs’ Ad Hoc Advisory Panel and led to a series of reparations and support for survivors and their families. Finally, in 1997, President Clinton apologized on behalf of the US, nearly 70 years since the study began. 1,8,9 10
Brandon et al6 published a paper about knowledge, attitudes, and beliefs regarding the “Tuskegee Study”. Their study showed that both white and black Americans have a fairly limited knowledge of the Syphilis Study’s details or timeline. However, when asked if they thought it could happen, African Americans were more likely to say yes than their white counterparts (77% vs 47%). However, in this study, there were other arms. These were designed to examine other causes of medical mistrust by African Americans. Their data show that the syphilis study is not the only contributor. In fact, this study showed that the “broader historical and personal experiences” are likely the larger cause and context. They suggest that strategies and interventions address medical mistrust, but to look at the larger context of social determinants of health as influences, stating,
“The greater level of medical care mistrust experienced by African Americans compared to whites has been implicated in lower levels of patient satisfaction with care, decreased participation in health promotion, lower participation in health research and less willingness to donate blood or cadaveric organs among African Americans. As long as high levels of mistrust exist among African Americans, there may be continued higher rates of underutilization of healthcare within this population. The Tuskegee study is a form of confirmation of what is already known or speculated about African-American treatment in medical systems. This continued detachment from the medical establishment will complicate efforts to eliminate racial disparities in health.” 9 (p 955)
It is clear that the familiar health disparities fall heavily on African Americans. Social determinants of health make the mitigation efforts (such as working from home, social distancing, quarantining) another example of privilege in the US. “A 6-fold increase in the rate of death for African Americans due to a now ubiquitous virus should be deemed unconscionable. This is a moment of ethical reckoning. The scourge of COVID-19 will end, but health care disparities will persist” 11 (p E2). This statement comes from an editorial in the online version of JAMA, April 15, 2020. If African American medical mistrust affects attitudes and beliefs, and behaviors related to public health recommendations persist, these disparities will likely continue to expand. The lessons of the Syphilis Study and other perceived genocidal activities among Black Americans should have long been addressed, but COVID-19 provides a new urgency.
Maureen P Scahill, NP, MS
Senior Public Health Advisor
Center for Community Practice, University of Rochester Medical Center