The Tuskegee Syphilis Study: How “science” betrayed us & haunt back 50 years later.

The Tuskegee Syphilis Study

So what exactly took place in Nazi-like research atrocity that was conducted in the name of medical science?  Tuskeegee is a city with a university in Macon County, Alabama, USA. The study started in 1932 and consisted of 399 Black men, who already had contracted syphilis and 201 of those who had not contracted it yet. However, these “volunteers” were not told what they were signing up for. In the midst of the Great Depression when medical care was already hard to obtain in this rural region, the Public Health Service and CDC in cooperation with local academic and medical authorities like Tuskegee Institute (now known as Tuskegee University) advertised a social medical roll-out program with following benefits: free physical examinations accompanied with rides to and forth the clinics, hot meals on examination days, and treatment for some minor ailments and injuries. It also had an added guarantee that their family would get recompensation if they agreed to an autopsy of the body after a series of medical studies.

This is particularly compelling in the context of the Great Depression and how male breadwinners have additional incentives to help with family financially. But for those who wondered if this could be too good to be true, there was added encouragement from the already trusted local authorities within the community (like pastors, black doctors, etc), emphasizing that you’d be considered lucky to join such“special medical program” to better their lives and the field of medicine, and convinced the participants that it is worth their time. So the men never agreed to any “syphilis study” at all.  People participated and agreed to free body checks and collection of data based on trust; the official authoritative figures in lab coats, doctors, and medical practices.

However, the doctors that they entrusted did not provide effective treatment even once the symptoms started to develop. This was despite scientific evidence of penicillin as an effective syphilis remedy, within the first decade of the study. In fact, participants were often not told if they had syphilis as doctors only commented that they had “bad blood” – which meant various daily malignities not limited to syphilis. But surely, once your untreated syphilis is worsening, you and your family might seek help?  Like second opinion or treatment? In some accounts, it is revealed that doctors were told that the participants would lose all “benefits” from the study if they sought after treatment, showing that the study had no intention to cure these men, EVER. By the way, this study, colloquially known as the “Tuskegee Syphilis Study”, comes with a full title: “Tuskegee Study of Untreated Syphilis in the Negro Male”.

From its inception, this study was structured as a funded, onslaught of slow death, to propel the shaky theories and the hypothesis it is based on. It’s arguably funded pseudoscience research that is riddled with death and harming the lives of many to be born. During the course of 40 years, 28 confirmed and possibly 100+ men died as a direct result of untreated syphilis from this study. Furthermore, it led to many more infections as a result of untreated participants, including children born with congenital syphilis.

The Pseudoscience of Tuskegee Study and Our Critical Thinking

Naturally, upon the leak of the Tuskegee Study to the public by the whistleblower Buxtun, there was a massive public outrage leading to the termination of the experiment. However, we need to acknowledge that the field (including those not directly involved), didn’t all just immediately say: “Yup, this is messed up; that was bad of us.” Some scientists and the medical community attempted to “still see value” in this or even outright defend it:

“There was nothing in the experiment that was unethical or unscientific. – Dr. John Heller (assistant in charge of on-site medical operations) ²” 

Now, many, many unethical measures are needless to be said – especially with the blatantly obvious premises and clear willingness to MAKE SURE all participants suffer a slow death due to the “autopsy-focused” nature of the study. However, the other half of Heller’s claim of this statement is also completely wrong. This study was EXTREMELY unscientific.

Starting with the premises of the experiment, the conception of the study was fundamentally founded on race science belief that was based on pure racism. It was believed that syphilis would manifest differently depending on your race.  African Americans were thought to show more damage to cardiovascular systems than to their central nervous systems, which was where the manifestation of the whites who they believed to have their “superior” brains.  Additionally, the experimental design is also flawed and the two study groups were not strictly maintained. For example, individuals starting off as syphilis-negative were kept in that group even if they later contracted and tested positive – ruining the integrity of the control group. Furthermore, we often discuss in science how new research addresses the knowledge gap, ie, it should contribute to some unanswered question or provide novel data to the body of knowledge. However, in this regard, the Tuskegee Experiment also fails to be “scientific”: it really adds nothing to the body of knowledge on syphilis. Syphilis is -and has been even back then – a well-documented disease. There are many historical records of what untreated syphilis looks like across time and place.  Multiple waves of infection surged nations across history before the establishment of useful treatments, and these outbreaks seemingly left a culturally ingrained record of how nasty this disease becomes when untreated. In Europe, there are numerous medical paintings well depicting such “untreated” syphilis (Google Image at your own discretion pleae). In Edo-era Japan, a poem talks of the nightjars (then, being a code for illegal prostitutes) “lacking nose”:

“鷹の名にお花お千代はきついこと”

To the Nightjars, ohana-ochiyo (pun with words sounding like falling nose) is indeed harsh³

 referring to the notorious terminal symptoms where noses fall off.  It is clear that to the eyes of those who conceived this study, this was really a sick “passion project” – a morbid curiosity, entranced by autopsies and examining the different ways that the black bodies succumb to the disease, hoping to find a difference in the manifestation of the disease for the “whites”.

While this is an extreme case of how clear the lack of scientific bases is, this study leaves an important message to all modern scientific thinkers – critical thinking. This may sound obvious but given that science (especially nowadays more than before) is a group endeavor and often institutionalized, being critical at all times requires not just checking your own bias on the research topic, but also when you are told what to do. During the days of Buxtun, disagreeing with the senior was seen as a much more unacceptable practice. However, the whistleblower facing a brutal punishment is a phenomenon far from over. In 2010, a metastudy of 216 corporate fraud is said to have identified over 80% of named employees who reported the fraud faced some sort of punishment including being fired. This kind of reaction unfortunately is not reserved for private institutions. Another account found that amongst the nurses who reported misconduct, all of them had suffered from some level of informal retaliation (including ostracism and pressure to quit), nearly 30% faced more formal reprimands, and 10% were suggested to seek psychiatrists. The message is clear – whistleblowers despite the public image of a heroic spotlight, face the danger of personal and professional stakes to this day, which only exacerbates in a work environment where proper legal protection may be lacking.

Buxtun, while not the only one who protested in the long course of study, took an exceptionally courageous step of not letting this issue die – despite all the rejections of his protests. More broadly, this is a testament to continuous critical thinking that should be required of all scientists to prevent a top-down approach to study. If anything, science should have its roots in not being afraid to point out that something is wrong.  The field-defining nature IS the falsificationism. This constant questioning should extend beyond the factual premise that lies as a foundation of your hypothesis under investigation, but also to the motive and the implication of the study. What question will this study answer? What is this for? And At what cost? Naturally, the Tuskegee study paved the way for numerous ethical guidelines that are legally binding including the modern practice of informed consent. While these legal reforms to protect whistleblowers do take place in later decades (Whistleblower Protection Act of 1989) for example, ultimately it cannot truly encourage people to step out of bystander, unless we address the research culture which is an uphill battle for the whistleblowers currently. Hence, researchers must be conscious of and vigilant on these matters across the board.

Beyond the History Textbook: When the Pseudoscience Revives to Haunt Us Today

I could have finished my writing here with a neat lesson-of-the-day, except in recent years, this study has resurfaced but with malignant intent.  While this brutal history forever remains accessible to the public, ranging from President Clinton’s Apology to educational content in Black History, my personal impression is that more discussion should’ve been made FROM the science community. Sure, maybe there are “enough” retailing in terms of science history, US history, politics, etc, but this had a catastrophic impact on the trust of populational medical research and servers as a primary example in the field that highlights the importance of informed consent and whistleblowing (though, note that consent was established as a prerequisite far before the end of the Tuskegee Study). So many measures now exist to make such atrocities near-impossible.  While this may have been not intentional, the lack of such proactive discussion from the science community of all levels perhaps buried this away as trivia for those “in the know”. Retrospectively, this may be one of the failures of our community – to understand and effectively address the underlying distrust of institutionalized science and authority by individuals from a marginalized community that has such a history of exploitation.  

In 2021, when COVID-19 vaccines were under way, a documentary-styled video production called Medical Racism: The New Apartheid, was distributed online via anti-vaccination group Children’s Health Defense, laced with conspiracy theories about newly made vaccines. The central assertion of the video is said to be that: the US wants to harm minorities with vaccines. They supposedly talk about the classical anti-vaccine evidence regarding the “link” between autism and the MMR vaccine, but they allege the COVID-19 vaccination efforts a secret experiments on the African American and Latin communities specifically. And to illustrate their point, they refer to the Tuskegee Study.

Yes, the Tuskegee experiment was real, and as Clinton puts it, it was “deeply, profoundly, morally wrong”. However, what we see here, is an exploitation of a truth to pursue a malicious motive. A racially targeted propaganda ONCE AGAIN, to hurt the minority community that is relatively more vulnerable by proactively dissuading them from accessing health care. To me, this is what makes this particular exploitation OF Tuskegee Study evil: it tarnishes the very thing that we should have taken as a lesson. The study happened because of its context which added up like a perfect storm: the community was already a medical care desert in the midst of an extreme economic crisis, fuelled further by racism on the side of the researcher. It’s only natural that such betrayal by “the science”, by the healthcare providers leads to more distrust and therefore this forms a negative spiral of real scientific healthcare not reaching out to them. Despite this recognition of the danger of losing trust, here we are this very narrative being regurgitated not to promote the accessibility of medical care nor transparency of science and research, but to dissuade people from excluding themselves from science as a whole.

The video piece supposedly further assures their target audience why they will not need the “supposed” immune boost from the vaccine by performing mental gymnastics: claiming that African Americans are “naturally immune from COVID-19” and that vitamin D will protect you from the disease. The irony of the production doesn’t end here but by how they are presenting the subject as well. The message is clear: viewers should not trust the medical authorities (the CDC and big pharma), but you should totally trust our information because look! Kennedy with all his “authoritativeness” is gracing us the serious advice.  While it is hard to measure the effect of this propaganda given that the video itself became unavailable shortly after its release on SM platforms, the impact it may have had to contribute toward radicalization and vaccine-hesitancy (which was apparently higher in minority communities) is easily imaginable. In a sense, it is “clever” production that dissuades the trust of mRNA vaccine by actually presenting no evidence that vaccines are unsafe, but it successfully taps into the larger historical trauma – fear-baiting on their memory of deception deeply ingrained in the community.

Unfortunately, there is perhaps no quick fix to trust that is once lost. After all, it is understandable self-defense skepticism in a population that was traumatized in such a manner. However, as the new medical frontiers are being explored and studied, these must be with the intention to deliver – to as many people as possible. If so, the science community must not let the brutality of historical trauma haunt us in the present, to be further exploited to contribute to the inequality of healthcare in the future. Rather, the past needs to be told openly to prevent such exploitation, and show a proactive stance that we have and will continue to evolve – as apology alone is a mere word, that will not earn us back the trust that is lost amongst some. These accounts of history don’t need to be for fear-mongering as well. The acknowledgment of what has happened in the past should also be in conjunction with how we have changed. For example, in the US, the National Research Act – a federal law on ethical guidelines for human medical research passed in 1974, and many institutions have added measures regarding the race and ethnicity of protected groups in studies. Policies and guidelines are often not the sexiest conversation science can offer. But for constructive conversation, these “follow-ups” on the old news highlighting what we have learned, and what we are doing now should be proactively communicated with compassion and acknowledgment of the historical misconducts. Hopefully, such conversation (including the uncomfortable introspection into the darker chapters in history) can lend to the promotion of our consistency, reliability, and our compassion – that we care -, to further the medical frontier to as many people as possible.

We will be hosting a screening event of this anti-vaccine film by Children’s Health Defense on upcoming Saturday (Feb. 22nd) at Queens. Join us there to explore and analyze how such misinformation and pseudoscience was being spread, and further discussion with the CUSAP team! Thank you for reading this rather lengthy journey of history and see you at the event!