Bad Blood Of The Past Still Implicating Medical Mistrust: The Tragic Tale Of The Tuskegee Study
Updated: Jan 5
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The Tuskegee study is such a tragic and unethical story, the government can only try and forget. This 40-year study, originally called “The Tuskegee Study Of Untreated Syphilis in the Negro Male” caused generations of Black Americans to mistrust medicine and revealed very little if any scientific discoveries. It may just be the bleakest point in microbiology history still casting shadows today.
As we face a global pandemic, we are seeing this legacy of mistrust continue to spread. The Harris Poll reports that only 43% of Black Americans will get the coronavirus vaccine when it is available. This is a dismal number compared to the 58% of white Americans but this is not just about vaccines. 72% of Black Americans trust doctors and nurses compared to 87% of white Americans. There are many valid reasons for this mistrust which include: cultural, educational, and socioeconomic status.
However, this mistrust is also rooted in history. The Tuskegee Syphilis trial is a horrific historical legacy that should not be forgotten.
The study started in 1932 during the Great Depression. This was a time when black Americans suffered from poor quality of life and had severely limited means of making money for their families. Pseudoscience and rumors were also rampant during this time. Black Americans (especially males) were painted as immoral, sex-crazed, and inferior. The study was conducted by the U.S. Public Health Service (PHS) to observe the natural course of untreated syphilis in Black American men.
The Public Health Service rounded up 600 black males, 399 with syphilis and 201 who did not have the disease. When one of the participants contracted the disease they were simply placed into the syphilis group. In return for their participation, they were promised free burial insurance, food, and medical examinations; what they received was a blood test, x-rays, spinal taps, and autopsies. They were also told they were going to be treated for ‘bad blood’ throughout the duration of what was initially a 6-month study.
There 'bad blood' was a deadly disease known (even at the time) as syphilis. But what is syphilis?
Treponema pallidum: Syphilis
To truly understand how horrific this study is, you must understand the progression of the disease. Syphilis is an ugly disease that leads to blindness, cognitive dysfunction, insanity, and death. Treponema pallidum is the bacteria that causes syphilis and has a corkscrew shape. Although syphilis has been around for centuries, it wasn’t until 1905 that Fritz Richard Schaudinn, a German zoologist, discovered the microbe. In the 1930s, when the Tuskegee Study started, it was estimated 1 out of every 10 Americans suffered from syphilis. In Macon County, where the study was conducted, 35% of the population was thought to have this disease.
Even today, over a hundred years after Treponema pallidum was discovered, we still cannot grow this microbe in the lab. Most of the time, to study Treponema pallidum, rabbits are used to propagate the bacterium.
Today, we know this microbe has 1 million base pairs in its genome or about 25% of the size of the E. coli genome. With such a small genome, T. pallidum must rely on the host for many functions. We know this microbe is microaerophilic (likes low oxygen levels) and can escape reactive oxygen species. Reactive oxygen species include peroxides, superoxide, and hydroxyl radicals. These molecules are a part of our immune defense symptoms against infections and usually can trap or damage the unwanted microbe.
Today and at the time, Treponema pallidum, was known to be transmitted through blood and bodily fluid, often as a result of sexual intercourse. The disease occurs in four distinct and exponentially horrifying stages; the first being the presence of chancre that disappears in a few weeks. In the secondary stage, symptoms manifest like a lot of diseases, such as fever, headaches, sore throats, and a rash. Mucous patches on the mouth, vagina, or anus, joint pain, and anorexia may also occur. This eventually leads to latent syphilis which is an asymptomatic stage. If you are unfortunate enough to reach tertiary syphilis, you can expect gumma, which are lesions on the skin and bones. In addition, bodily deformities, hefty cardiovascular complications including aortic regurgitations, coronary ostial stenosis, or saccular aneurysm are seen. Eventually, the whole neurological system breaks down, ultimately ending in death.
Most importantly is that today we know, despite the dramatic manifestation of Treponema pallidum in humans, the disease is easily treated with penicillin.
At the start of this study, treatment for syphilis was arsenic and mercury which was not very effective. However, just before the start of The Tuskegee Study, in 1928, penicillin was discovered. This was the wonder drug that sparked the golden age of medicine where antibiotics were saving millions. 1947, penicillin replaced mercury and arsenic as treatments for syphilis, but the Tuskegee participants never received this treatment.
The cure for syphilis had been found and the victims of the STI no longer had to endure watching themselves or their loved ones go through the progression of the disease. Mothers no longer had to wonder if syphilis would be passed to their babies or if they would have another miscarriage or stillbirth as a result of the bacterium.
But this simple, effective and inexpensive treatment was never offered to the participants of the Tuskegee Study, not after WWII, not after the Nuremberg code was adopted, and not even after the Civil Right Movement or the assassination of Martin Luther King Jr. There were so many moments where these terrible researchers had the chance to save lives. In the end, 28 died directly from a syphilis infection, 100 from complications to the disease and at least 40 spouses also contracted the disease, which was then passed to their children.
In the mid-1960s, Peter Buxton, a USPHS employee stationed in San Francisco heard about this "study". He was working as a venereal disease contact tracer, finding those who might have syphilis and asking them to get tested and treated. To him, this study mirrored that of the crimes of the Nuremberg Doctors so he wrote a report drawing on the similarities, begging the USPHS to put a stop to this appalling study. Many did not see the similarities to Nazi Germany studies and his plea was ignored.
Those who knew it was unethical, feared they would be fired and could not support their families. To others who knew about the project, they saw nothing wrong because the participants were doing it as “volunteers”. Ethics and morals are one of those messy subjects that are often easy to muddy the waters so we can not see a situation clearly.
Whistleblowing is no small feat and often comes with severe consequences but sometimes even those who repeatedly try and blow the whistle are never heard. Buxton was not the only whistleblower on the Tuskegee Study throughout the years, just the only one who was loud enough and trusted enough to spark a public outcry.
Bill Jenkins, a Black epidemiologist in the CDC, also tried to put a stop to the study. He also wrote a report but neither this nor Buxton’s reports would be what would bring the Tuskegee Study to a halt. Once more history will prove to us it is now what you know but who you know that ultimately decides your place in history.
Buxton took a slightly different approach, writing to his superiors several times even trying to plead with politics. After the assassination of Martin Luther King Jr., Buxton stated: “The group is 100% negro. This in itself is political dynamite and subject to wild journalistic misinterpretation.”
Buxton left the public health service for law school where he became acquainted with Edith Lederer, a young reporter at the Associated Press. Equally horrified by what she saw, she brought the documents to her boss who handed the story to Jean Heller.
On July 25, 1972, it was the beginning of the end of the syphilis study when the headline “Syphilis Victims in U.S. Study Went Untreated for 40 years” hit the newsstands. There could no longer be any doubt that institutionalized medical racism was rampant throughout America.
This forever changed the research with human subjects in America, but it was too little too late for the participants of the Tuskegee Study. By 1972, the Tuskegee study finally came to an end with only 74 subjects still alive. The legacy, the mistrust, and the descendants still live on today.
Their descendants still live on
The surviving participants received $10 million in a settlement, lifetime medical benefits, and burial services. As this study not only impacted the participants but also their spouses and offspring, these benefits were extended to them as well. All the participants from this study have since passed away with the last one in 2004 and the last widow passed away in 2009.
One would hope is that their sacrifice could have, at least in some way, benefited others through some revelation. The sad truth is that not only were a group of people exploited for "science", but the study revealed very little.
The fact that it went on for so long is very disturbing. How different would this study have been if the participants were white?
There are many lessons from the past that must not be repeated, so learning about things like The Tuskegee study and applying those lessons to current practices and attitudes are very important for us all to consider. Scientists must hold themselves to a higher standard, we must respect all life and the environment in the pursuit of scientific advancements. The public must engage and communicate with scientists to ensure these standards are kept and the injustices of the past and present do not pave our futures.