The Tuskegee Syphilis Experiments. I’d always known the basic overview – hundreds of Black men with syphilis being withheld treatment in order to track the disease’s “natural progression” – but I’m learning deeper and it keeps getting more and more disgusting. If you want to know one reason why Black people often mistrust the medical establishment as well as the government, the Tuskegee experiment is about as blatantly apparent as you can get.
A few gross facts about this United States Public Health Service (USPHS) led human experiment, entitled “Tuskegee Study of Untreated Syphilis in the Negro Male” and running from 1932-1972) to really pound in the seriousness and then some more details:
- the participants weren’t told they even had syphilis & instead were told they were getting special treatments for “bad blood” – a kinda catchall term that in addition to syphilis could refer to things like anemia
- the experiment continued for about 30 years after an effective treatment was found in 1947 (and even at the start of the experiment there were not-so-effective treatments available)
- 28 participants died from syphilis, 100 more from syphilis-related complications, and many went blind or insane
- at least 40 participants’ wives became infected by the participants and it was passed on to 19 newborns during birth https://bit.ly/2Y4kmh3
Those facts are horrifying, but it goes much deeper – one of the most disturbing things I only just learned while researching this was that, the CDC voted to CONTINUE this experiment in 1969! This was 22 years after the Nuremberg Code was put into place – a set of principles for ethical research on human subjects which was established as a response to the horrendous treatment of concentration camp prisoners by the Nazis in World War II. It literally starts with “The voluntary consent of the human subject is absolutely essential” and includes prohibition of experiments that cause unnecessary harm. Yet, over 2 decades after U.S. doctors condemned the actions of the Nazi doctors for their human experimentation, they still thought it was ethically okay to experiment on Black men in America?! Without their consent and while willfully harming them?!
The experiment wasn’t ended until 1972 – and only then because news of it got leaked to major papers. And, another thing I found out that makes all this even more disturbing that it was never really a “secret” – at the same time that the study participants were held in the dark, the doctors running the study were publishing scientific papers on it – like 15 of them! A couple people tried to tell the press before, but the press wasn’t interested and there were no cell phone videos to document the crimes imposed on these men, no social media to share their stories.
Note: I’m going to include some quotes from and attitudes of government officials running the study and others which everyone will hopefully find offensive. These disgusting viewpoints are NOT my personal opinion.
The experiment (they called it a “study”) ran from 1932 to 1972. All of the participants were Black men, most of whom were poor and with a limited education, and, they were willfully deceived throughout the entire experiment – the whole thing depended on this deception. The men couldn’t know they weren’t actually getting treatment or else they’d go try to get treatment elsewhere; they couldn’t know that one of the painful “treatments” they were given, a painful spinal tap (lumbar puncture), was actually a diagnostic test to see if syphilis had gotten to their nervous system or else they would leave; hell, they couldn’t even know they had syphilis, because of the disease’s stigma (and they didn’t think Black people, with their “inferior” minds could be convinced to agree to treatment for syphilis if they knew they had it, while at the same time these doctors rationalized that they couldn’t tell them they weren’t getting treated because then they’d go try to get real treatment…). So these men were lied to (we need to treat you for “bad blood”), bribed (we’re offering free medicine, lunches, even rides into town!), even actively prevented from seeking real treatment.
Fast forward to today – How can the Black community be expected to blindly trust doctors simply because the doctors “know what’s best for them” – when there’s evidence throughout history that even when those doctors knew what was best for their patients, they withheld that treatment? (the Tuskegee experiments being just one example)
The medical establishment needs to *earn* the Black community’s trust and right now, they’re still failing (I’m talking at the systemic level, not individual doctors or institutions, many of which are doing tremendous work led largely by minority medical workers who, after having to work harder than White people to get where they are are now having to take on the extra labor of leading outreach and reform). If you look at the statistics, to this day Black people are more likely to die from a long list of medical conditions and they’re more likely to have those conditions in the first place (for reasons like living in more polluted areas thanks to the NIMBY-ers, unequal access to fresh foods, and unequal access to preventative medicine). A shocking statistic I saw recently is that, if Black people died from COVID-19 as the same rate as White people, 13,000 Black people would still be alive. That’s 13,000 mothers, fathers, daughters, sons, sisters, brothers, friends https://bit.ly/30E6DyS
Racial inequalities in health care run sooooo deep and the Tuskegee Study has ripple effects that are felt to this day. Black people have legitimate reasons to distrust medicine. And this distrust can compound the lack of adequate access to care, further exacerbating health care inequality. And this is not their fault. Their fears are rational. “Trust us, we know what’s best for you” isn’t gonna cut it.
As a society (and especially us White people who have been benefiting from the systemic inequality), I think it’s important that we learn the history of the Tuskegee experiments. When I was writing my post on Henrietta Lacks (a Black woman whose cancer cells were taken without her consent and used to establish what is now the most commonly used human cell line in biomedical research), I kept seeing Tuskegee mentioned and thought that would be an important topic to cover as well, a topic I hadn’t really learned much about since grade school.
When I started doing the research for this post I learned that I had a LOT more to learn. I’m ashamed to say that one of my only memories of learning about it as a young child was the relief I felt when I learned that the men in the study were not actually purposefully injected with syphilis by the government (though I now learned the US government did do that in a Guatemalan experiment which was uncovered as the result of a researcher looking into the Tuskegee one). The way I learned it, or at least the way it stuck in my mind, wasn’t nearly as bad as it really was. No, the government did not purposefully give the men in this study syphilis BUT they did so so so so much completely barbaric racist [insert your favorite curse word here].
And I am so angry. On so many levels. Including anger at myself for not learning more sooner. So I thought I’d help others who might need to learn more too by giving a chronological account of what happened and a list of sources that helped me (websites, documentaries, & podcasts) at the end.
The forerunner to the experiment started in the mid-1920s, when there was this big public health push to irradiate syphilis. Macon County, Alabama was seen as an attractive location because their initial testing in 1926 found that ~35% of its adult citizens were infected (a high rate they were quick to attribute to the Black community’s supposed sexual promiscuity, lack of self-control, and overall “dirtiness”).
So in 1929, they started a treatment initiative, hoping they could irradiate syphilis. But, they found that was going to be harder and more expensive than they’d anticipated… at this point, patients were being treated with a combo of mercury and bismuth – pretty nasty stuff, & only curative in less than 30% of patients – but this was a “legitimate” treatment at the time, given to White patients too.
But then Wall Street crashed, the Great Depression kicked in, and funds dried up. So a couple of guys running the study decide – well, maybe if we keep following the men whom we would have been treating if we had the money, but since we don’t are now going untreated, we can scientifically show just how bad this disease is and get the government to give us some more money. Yep, they argued that watching Black people get sicker would actually help the Black community because it would show the need for treatment. A study of untreated White syphilis patients in Oslo had shown how the disease affected White people (this study was ended once a treatment was available since withholding it would be unethical), but Black people were considered to be almost a whole different species. Would the disease affect them the same way? If not, the doctors should know in case they should be treating them differently in order to better care for them – or at least that’s how the study leaders twisted their perverse logic to make it seem like it would be beneficial to the Black community. And, even if they did get sick just the same way as White people, that would help Black people too, because it would show – they’re people, just like us! This disgusting marketing strategy worked and the government got on board.
The “official” experiment started in 1932. They recruited 600 Black men – They actually had to examine women & children too to get enough men of working age so that it wouldn’t look like they were testing these men for military recruitment – let the deception begin! And let the deception continue – 399 of the recruited men had syphilis and 201 didn’t. But even the ones who did have syphilis weren’t told that they did. Instead, they were all told they were being treated for “bad blood.” To help give things some legitimacy in the Black community they even involved some Black medical workers including Dr. Dibble and Nurse Rivers (note: the Nurse Evers in the movie “Miss Evers’ Boys” is a fictionalized version of Nurse Rivers with all the romance stuff made up, and her role is complicated because, as a Black woman taking orders from White male physicians it would have been hard for her to push back).
The deception that the men were being given “treatment” was key (they were often given fake treatments or real treatments but at so low of a dose that they wouldn’t do anything helpful). They didn’t know that they were part of an experiment – and they couldn’t find out or else they might leave the study. In addition to these “treatments,” patients were promised treatment for other minor ailments that might afflict them – basically they were told they were getting free healthcare. At a place and time where healthcare was hard to come by. They were even given free rides to the clinic and free meals on examination days.
And the study leaders were gonna be there for them to the very end – they’d even offer burial stipends. That burial stipend was added to make it easier for the study leaders to obtain autopsies without consent. Initially the study was going to be short-term but in 1933 they decided and got authorization to, extend it until autopsy and they didn’t want the participants to find out. The correspondence between the doctors setting all this up is absolutely disgusting https://bit.ly/3foWVEY
Incentivizing participation became increasingly important as word got out about this miracle drug, penicillin – which was actually being offered FOR FREE!!!!!!! The 1943 Henderson Act made testing and treatment for STDs publicly funded. And in 1947 penicillin became the standard of treatment for syphilis, and the US government made it really easy for everyone else to get. The USPHS, the very same institution leading the Tuskegee experiments, set up several “Rapid Treatment Centers.”
But if the men got penicillin that would mess with their experiment results – and they couldn’t let that happen, so the study leaders ACTIVELY PREVENTED THE PARTICIPANTS FROM GETTING PENICILLIN! They provided doctors with lists of the study patients who were not to be given treatment for syphilis. And when some of the men were drafted in 1941 and the military doctors found the syphilis during the medical entrance exam, the study leaders had the men removed from the military so that they didn’t get treated.
note: some of the initial participants (~30%) did end up getting some penicillin, but not from the study – at least not for the syphilis. Some patients moved away and got treatment elsewhere, and some patients in the experiment were prescribed penicillin for other conditions the patients became afflicted with – there were 2 main doctors who did most of this prescribing and it’s unknown whether they were actually doing this as a way go around the study and give the patients treatment for syphilis they knew they needed.
As time went on, the USPHS would occasionally review the study. And time after time they would give it the all-okay, though they had to come up with better excuses for continuing to withhold treatment. One rationalization that seemed to work was that these patients’ diseases were too far advanced for penicillin to be of use – it might even harm them. (note: syphilis has 3 main stages – there’s the first stage when you get a sore-y thing, then in the second stage you get a rash, maybe a fever and some fatigue, etc. Then you enter a “latency phase” where the virus is still in you but it’s laying low. And for ~1/3 of the patients, it comes back with a vengeance – the third stage can attack the eyes, the brain, vital organs, and cause death in the worst cases).
Minutes from a 1965 CDC meeting read: “Racial issue was mentioned briefly. Will not affect the study. Any questions can be handled by saying these people were at the point that therapy would no longer help them. They are getting better medical care than they would under any other circumstance” https://bit.ly/3foWVEY
As late as 1969, there was CDC meeting where a panel of doctors reviewed the study. One objected, but the experiment was given the green light to keep going as before. Even though a memo written by Dr. James B. Lucas, Assistant Chief of the Venereal Disease Branch admitted ”Nothing learned will prevent, find, or cure a single case of infectious syphilis or bring us closer to our basic mission of controlling venereal disease in the United States” they concluded that they should continue the study. As one member, Dr. J. Lawton Smith said, “You will never have another study like this; take advantage of it.” https://bit.ly/3foWVEY
The story broke in mainstream media on July 25, 1972 thanks to an Associated Press article by Jean Hiller, which appeared in the New York Times and the Washington Post. Hiller had been tipped off by a whistleblower named Peter Buxton, a Public Health Service (PHS) investigator who found out about the experiment and was rightfully appalled. He started by writing a letter to the CDC’s director of vernal diseases, who responded that the study was fine. Buxton, rightfully, disagreed, so he went to the press.
Finally, the public started to pay attention and demand action. The government established an Ad Hoc Advisory Panel to review the study, which, in October 1972, declared it “ethically unjustified.” Finally, in November 1972, the experiment was officially ended.
The following summer, an attorney named Fred Gray filed a class-action lawsuit against Alabama and the USPHS on behalf of the participants & their families. It ended in a 10 million dollar settlement which included funds to compensate the study participants and their families. Most of the participants were dead by that point (most not because of syphilis but just because the apology came soooooo late), but the government paid the ones who were still alive. The settlement also involved putting in place the Tuskegee Health Benefit Program (THBP) to provide lifelong health care to the wives and children of the participants. In 1974, Congress passed the National Research Act and the USPHS established an Office for Human Research Protections.
But, it wasn’t another two and a half decades before the U.S. government officially apologized. President Bill Clinton finally apologized on behalf of the U.S. government on May 16, 1997 (a timing that was soon after the release of that “Miss Evers’ Boys” movie and after the Tuskegee Syphilis Study Legacy Committee sent him a letter urging him to do so…). But better late than never. And he established the Tuskegee University’s National Center for Bioethics in Research and Health Care (Tuskegee University is the same as the Tuskegee Institute, but they changed their name).
*Revelation* of the Tuskegee experiment led to a lot of positive changes with regards to medical ethics. But the the experiment itself did not. Revelation of the death of countless Black people at the hands of police will hopefully lead to real positive criminal justice reform. But George Floyd shouldn’t have had to die for that. Trayvon Martin shouldn’t have had to die for that. Breonna Taylor shouldn’t have had to die for that. Why must Black people keep dying in order for society to make changes that are consistent with the ideals we hold on the value of humanity?#BlackLivesMatter
note: I think a lot of us White people are trying to find a way to help and so I hope that these posts on issues surrounding racial inequality in science and medicine are helpful in some way, and I sincerely apologize if anything I wrote came across the wrong way – I’m still learning how to be a good anti-racist White person in a world I’ve grown much too comfortable in.
Want to learn more?
- CDC U.S. Public Health Service Syphilis Study at Tuskegee: https://bit.ly/3e22itp
- History Channel, Tuskegee Experiment: The Infamous Syphilis Study, Elizabeth Nix: https://bit.ly/2Y4kmh3
- Time, How the Public Learned About the Infamous Tuskegee Syphilis Study, Olivia Waxman: https://bit.ly/30Hv9PG
Documentary: NOVA, The Deadly Deception
Podcast: Stuff You Missed in History Class https://ihr.fm/2ArnA5f
- A really good academic paper, where I got the direct quotes: Brandt, Allan M. 1978. “Racism and research: The case of the Tuskegee Syphilis study.” The Hastings Center Report 8(6): 21-29. http://nrs.harvard.edu/urn-3:HUL.InstRepos:3372911
- Donald H.J. Hermann, Lessons Taught by Miss Evers’ Boys: The Inadequacy of Benevolence and the Need for Legal Protection of Human Subjects in Medical Research, 15 J.L. & Health 147 (2000-2001) https://bit.ly/2MXljRM