The Tuskegee Syphilis Study's Legacy Is America's Continued Abuse of Black Bodies

·7-min read
Photo credit: Atsushi Nishijima - Amazon Prime
Photo credit: Atsushi Nishijima - Amazon Prime

Barry Jenkins’ The Underground Railroad series couldn’t be better timed. In a year during which the US has grappled with how to address its long history of institutional racism, Jenkins’ work stands out as an indulgently slow and strangely beautiful journey through generations of Black trauma. It serves up the past as lens through which we can view the continuing abuses of the present.

In episode two, Jenkins reimagines the Tuskegee Syphilis Study, a subject that has been raised a lot in popular discourse around vaccine hesitancy in the United States. The latest data show that Black and Latine people have received smaller shares of vaccinations compared to their shares of population than white and Asian people, and there has been no shortage of op-eds citing the Tuskegee study as partially culpable.

However, the experiments conducted on 600 Black men over 40 years in Tuskegee were not so much an anachronism as part of a long history of racially biased and insensitive medical practices. Placing all the blame on one particularly horrific episode is no different to blaming a single cop for the institutional racism of law enforcement. Instead, we need to reflect on ongoing structural racial injustice and investigate how we can change institutions which have continued to result in unequal outcomes for marginalised groups in the half century since the Tuskegee study ended.

Photo credit: Atsushi Nishijima - Amazon Prime
Photo credit: Atsushi Nishijima - Amazon Prime

The Tuskegee Syphilis Study, officially called the “Tuskegee Study of Untreated Syphilis in the Negro Male” was conducted from 1932 to 1972 by the United States Public Health Service at Tuskegee University, a historically Black college in Alabama. Black men, some of whom had syphilis, were recruited and promised free healthcare and other benefits in return for being tested and monitored. Initially, the plan had been to follow participants with syphilis for six months, then treat them.

But when funding fell through, the study continued but treatment did not. Instead, participants with syphilis were not informed of their diagnosis and did not receive treatment for it. Many were told they had 'bad blood' as the study doctors continued to observe their untreated syphilis and prevented them from obtaining treatment when they were seen by other doctors or diagnosed during their medical exam for the draft. Subjects in the study were not deliberately infected — although the US did do that in Guatemala — but they were left to die untreated and allowed to unknowingly spread a deadly disease around their community.

Even by the standards of the time, the study was as unethical as it was unscientific. Perhaps we shouldn’t even call it a 'study', as it yielded a lot more human suffering than it did scientific progress. Publications arising from it drew criticism and numerous people employed in the study expressed ethical and scientific concerns. By 1947, penicillin was widely available and the standard treatment for syphilis, but it was denied to study participants (although some were prescribed it for unrelated diagnoses).

A hundred and twenty-eight men in the study died of syphilis or related complications, and many more people in the surrounding community likely contracted the condition from as these men were unwittingly spreading it. At least 40 of the men’s wives were infected and 19 children were born with congenital syphilis. It was not until 1972 that a leak made the world aware of the horrendous abuses perpetrated on these men by the US government.

Often, the Tuskegee study is painted as unique, but it’s very much part of a centuries-long trend of science and medicine treating Black and brown bodies as if they have less value and fewer rights. Seeing Back and brown bodies as lesser than white ones is what colonialism is about, it’s baked into the DNA of the USA.

Photo credit: Atsushi Nishijima - Amazon Prime
Photo credit: Atsushi Nishijima - Amazon Prime

The 1788 Doctors Riot was sparked by the theft of Black bodies from graves for experimentation. Enslaved women were used for experimental operations in the 1840s, without proper anaesthesia. This isn’t all ancient history either; forced sterilisation of nonwhite immigrants in US Government run facilities was exposed in September 2020. We continue to neglect treatments for tropical diseases, because they don’t kill people who the pharmaceutical industry sees as valuable consumers.

In January of this year, I stood in a refugee camp with Haitian, African, and Central American refugees who had been denied the right to claim refuge in the US due to the risk of Covid-19, then I crossed home and drove past packed bars. It’s hard to argue that the US government’s approach to public health is not one that places a higher value on white lives.

But when medical experimentation does yield results, the authorship of Black excellence and the role of Black people is consistently erased. Henrietta Lacks's cells were taken, cultured, and used all over the world without her consent. Experiments on them have saved countless lives, but until recently she remained anonymous.

Lacks is not the only example of medicine erasing the contribution, whether voluntary or involuntary, of Black people. The United States learned about vaccination, at least in part, from enslaved people of African extraction. This did not stop them from forcing questionable vaccines on enslaved people who, understandably, were skeptical about vaccination once given the right to control their own bodies. Indeed the test used for syphilis was developed by William Hinton, the first Black physician to teach at Harvard. In January 2020, Uché Blackstock wrote in STAT News that she felt compelled to quit an academic job because she “could no longer stand the lack of mentorship, promotion denial, and work environments embedded in racism and sexism.”

A series of studies conducted by Ralph Katz, an epidemiologist, suggest that recollections of Tuskegee actually have little to do with modern day hesitancy among Black people to participate in medical experiments. Instead, Katz suggested that this had long been used as an excuse and had given those recruiting for studies a way to avoid looking at the shortcomings in their own recruitment. Modern day vaccine hesitancy, which is not the same as refusal, has its roots in modern day racism as much as it does in what happened decades ago in Alabama.

Photo credit: Atsushi Nishijima - Amazon Prime
Photo credit: Atsushi Nishijima - Amazon Prime

Placing all the blame on the study overlooks the ongoing issues with access to healthcare and unequal treatment of Black people in the US healthcare treatment. Vaccine clinics tend to be in areas that aren’t easy to access from historically Black neighbourhoods, and even when they are set up in predominantly Latine areas they tend to provide appointments in a way which leads to them being disproportionally booked by white people. Online appointment systems reward people with the time and consistent internet access required to navigate the USA’s labyrinthine appointment making systems. It’s these oversights today that make people less likely to get vaccinated and these are much easier to change than the horrible actions of the Tuskegee doctors.

It’s important to look back at the past, as Jenkins does so beautifully in the series, but we can’t stop there; we need to reflect on how we can avoid repeating our mistakes. After news of what happened in Tuskegee broke, life expectancy at the age of 45 dropped by up to 1.4 years for Black men. But it would be wrong to accept that as the continuing and inevitable truth.

Rather than lifting up the abuses at Tuskegee as an excuse, the USA’s medical establishment ought to use them as a mirror in which to reflect on its continuing failures to serve marginalised communities. That’s what makes Jenkins’ The Underground Railroad so perfectly timed for a year that has demanded that we not just remember the victims of racism, but that we reconstruct our society to prevent us repeating the crimes of the past.

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