A few weeks ago, I was reading through my lecture notes and came across a single bullet point just casually mentioning an experiment on African-Americans where the subjects didn’t have informed consent called the Tuskegee Experiments. My reaction was two-fold – first, what?! Second – why have they not gone into more detail about this?? So I went and found out some more detail. And what I found was a shocking example of abhorrent abuse of power by trusted healthcare professionals that I think should’ve been detailed in its own lecture and not just mentioned as a passing comment. As a result I find myself writing this post, because I think everyone should know their history and see what can happen when the medical profession isn’t held accountable to the people it serves.
In 1932 the US Public Health Service launched a study following the progression of untreated syphilis in black men in Macon County, Alabama. The study was called the “Tuskegee Study of Untreated Syphilis in the Negro Male” – named Tuskegee because the Public Health Service conducted the study with the Tuskegee Institute in Macon County.
At the time syphilis was a massive public health issue, with 300,000 new cases every year. Pre-1932, the study had originally been 1 of 6 pilot projects in the South aiming to diagnose and treat syphilis in poor black communities. But this program was discontinued when the Public Health Service rather quickly realised they had underestimated the cost. During the course of that program, however, they did uncover news that an incredibly high proportion of people in Macon County were infected with syphilis- 35%!.
In this poor, black and highly infected community Dr Taliaferro Clark saw a so-called “unparalleled scientific opportunity”. He proposed a 6-month study of untreated syphilis with the primary aim of investigating whether the disease affected black people the same as it did whites. And just like that, patients became experimental subjects…
The study involved 600 black men; 399 with syphilis and 201 without. The participants were primarily sharecroppers, many of whom had never before visited a doctor. This study took advantage of medically and socially disadvantaged, vulnerable people. These men trusted the Public Health Service and were unlikely to ever question the doctors. They were promised free medical care, given free meals and burial insurance in return for taking part in the study but were never truly informed of the nature of the study.
The nature of the study being…. really quite horrific. To start, the researchers told the men they were being treated for “bad blood” which is an ambiguous term which could’ve meant syphilis but could also have meant a number of other things. And throughout the study the men were never told that it was syphilis they were being treated for. Not that they actually were being treated, despite being told they were being.
The researchers not only didn’t treat the men but actually went to the effort of pretending they were treating them by giving them placebos which were in fact just vitamins, aspirin and tonics which did nothing to help syphilis – which the researchers knew, of course. In order to determine the prevalence of neurological syphilis researchers would conduct a spinal tap on subjects under the guise of giving “very special free treatment”. This level of dishonesty is shameful, not only omitting the truth which is bad enough but explicitly lying time and time again to the unwitting participants.
The data from those initial 6 months showed that blacks did suffer the same complications as white patients infected with syphilis. And those complications weren’t exactly trivial. They included blindness, insanity and death. But instead of shutting down the study and treating the participants for this life-changing disease this news only propelled the researchers forward. Raymond Vonderlehr, one of the chief originators of the Tuskegee study, pushed to make it an open-ended project and as a result a study that started out as 6 months actually lasted nearly 40 years.
And in those 40 years, not only was treatment denied but the lengths that the researchers went to prevent treatment was pretty extreme. In 1938 a nationwide campaign to treat syphilis was introduced- offered everywhere except for in Macon County. What’s more, if participants sought out help they were stopped; one detailed attending a clinic in another town and being sought out by a nurse from the study and sent back home before they could access the treatment. And during World War II, scientists even appealed to the draft board to exclude Tuskegee men from service in order to prevent the men from being treated for their syphilis as it was part of policy for men who were enlisted to be treated. At this point I guess it won’t surprise you that penicillin also wasn’t offered to the men when it became the established and widely available treatment for syphilis. But it does disappoint, doesn’t it? To think that on so many occasions these men could have been treated and saved from their suffering and an active decision was made not to.
Now you may be wondering, how did something like this go on for 40 years and no one noticed? The sad fact is that the Tuskegee experiments weren’t exactly a secret. The results of the study were periodically published in major medical journals throughout the study period and even in Congress. But nobody questioned the ethics of the study because- simply put- nobody cared about the lives of these poor black men. The awful truth is that treating African-American individuals as test subjects who’s lives were somehow worth less was a completely normalised practice. And coming to that realisation is probably what upset me most about this whole torrid affair. I have to say that I assumed, even with my knowledge of what society was like back then, that had the wider medical profession known about the study they would’ve condemned it. I might only be one third of a doctor but even I know that this study was unethical on so many levels. It doesn’t take a genius to see that this goes against the very first medical principle we’re taught, ‘do no harm’.
It’s amazing, in a terrible way, that the study actually ran for as long as it did. Even when ethical principles for human experimentation were laid out like The Nuremberg Code in 1947, the study continued. The director of the experiment supposedly failed to see how the Tuskegee experiment was in direct violation of it. Alright then, let’s have a look. “Voluntary informed consent”. No. “Risk must be weighed against expected benefit”. Strike two. “Unnecessary pain and suffering must be avoided”. I think you get the picture. Even with the backdrop of the civil rights movement in the 60s, where we saw massive legislative gains in the rights of African-Americans, this study prevailed. Social change was happening and the researchers totally disregarded it. So often bad behaviour is given a ‘Get Out of Jail Free’ card because “it was ok at the time”. I don’t believe that is a very strong argument to start with but when you consider the context there was literally no excuse for this study to continue because it wasn’t ok at the time.
So when, and how did the study come to an end? Let’s just say they didn’t go down easy. In the mid-1960s a venereal disease investigator called Peter Buxton heard a story about an insane man who was rushed to a physician and treated, only for the local medical society to punish the physician in response. Buxton expressed his concerns around the Tuskegee study to his superiors and so the Public Health Service formed a committee to review the study. Great, sorted! Nope. The panel voted to continue the study and continue to withhold treatment with the goal of tracking the participants until they had all died. Their reasoning was that the men had been untreated for so long that penicillin might not help anyway and “telling them would only upset them”. Ridiculous, is my response to that. Might not help? Sounds like one way of saying MIGHT HELP THEM YOU SOCIOPATHS. Sorry, calm. I. Am. Calm. As for the whole, “telling them would upset them” thing, I think that that is beside the point. Yes, it will upset them. Rightly so. They deserved to be shown some respect, told upfront what had happened and receive an apology. Plus reparations. A whole lot of reparations. Back to Peter Buxton, who I have profound respect for – not only for speaking up in the first place but then for leaking the story to a reporter following the PHS’ decision.
The Washington Star broke the story in July 1972, prompting public outrage and causing the government to launch an official investigation. In October 1972 the panel advised stopping the study at once and a month later the end of the Tuskegee Study was announced. Over the course of the Tuskegee study, 28 participants died from syphilis. 100 more passed away from related complications. At least 40 spouses had been diagnosed with it and the disease had been passed on to 19 children at birth. It’s important to keep that in mind, to understand that no amount of reparations would take back what happened here. In 1973 a class-action lawsuit was filed and a $10 million settlement was reached. As part of the settlement, the US government promised to give lifetime medical benefits and burial services to all living participants and in 1975 wives, widows and offspring were added to the program. The last study participant died in January 2004.
I wish that I could say that this was an isolated incident but it wasn’t. Upon researching this I came across the details of so many unethical experiments that had been carried out in the name of science and it makes me sick. I always pride myself in my association (or future association) to medicine, think of it as a noble profession where you can do some good. That hasn’t completely changed, but I am left a little less starry-eyed by the medical world than when I started. Medicine has a dark past like everything else, I guess it was silly of me to think it could be exempt from it. What’s important is that we learn from our history and strive to be better. A whole lot better.
When I originally thought of writing this blog post it was not quite as topical as it is today. In the past several weeks we’ve seen a massive Black Lives Matter movement and I absolutely stand by it. When I was younger and learnt about the American Civil Rights Movement and what society had looked like back then I would think ‘wow that’s awful, at least it’s nothing like that now’. As I’ve grown up I’ve come to see that we’ve not come nearly as far as I thought we had and to say I’m disappointed would be an understatement. My little sister said something to me that’s been playing on repeat in my head ever since. “Wow. I used to wish I wasn’t brown because people assume we’re terrorists but now I’m just glad I wasn’t born black.” There is so much wrong with this. It says so much about the world we live in. My sisters deserve better. The Tuskegee participants deserved better. George Floyd. Breonna Taylor. Elijah McClain. They deserved better. And countless others.