Doctors and nurses are consistently ranked as the most trustworthy professions in the modern world. Their commitment to public health and scientific advancement seems to have endeared both disciplines to the people they serve. Yet, historically, this hasn’t always been the case. Many of the medical field’s standards for ethics and safety arose in the late 20th-century. This is especially true in medical research, where misaligned incentives often drove doctors and researchers to do terrible things in the name of scientific progress.
In America, the most infamous of these atrocities is the Tuskegee (Tusk-ee-gee) Syphilis Study. The study, started in the 1930s, was meant to observe the natural history of untreated syphilis, a harmful venereal disease.
The 40-year investigation was run by the US government, who claimed it was uncovering priceless medical information. In reality, several flaws in the experiment rendered any findings irrelevant. Yet, the study’s lack of scientific value was far from the worst problem.
That distinction belongs to the overt racism that influenced the disquisition from its’ beginning. The primary research question relied on racist pseudoscience regarding the bodies of black people. The participants, all African-American men, were lied to about the study’s purpose and process. Not only did the doctors refuse to inform the men of their diagnosis, but they were refused treatment for their entire lives.
The outcome was dozens of unnecessary deaths and the long-term degradation in trust between African-Americans and the medical community.
The Tuskegee Syphilis Experiment is perhaps the darkest stain in the history of American medical research.
Syphilis is a bacterial infection most often spread through sexual contact. The disease reveals itself with small painless sores around bodily orifices. But, if left untreated, the condition can wreak havoc on a person’s heart, brain, and other organs. In some circumstances, it can be fatal. Tragically, pregnant mothers who carry the disease can even pass it on to their children.
Syphilis arose in the Middle Ages and, in the Renaissance period, it reached epidemic levels throughout much of the world. Physicians struggled to find an effective treatment until the early-20th century. At that time, scientists synthesized a drug called Salvarsan which dramatically reduced symptoms. But, Salvarsan wasn’t perfect, and many authorities in the medical field insisted that more research needed to be done to properly understand this ailment.
In 1928, doctors in Norway published the Oslo Study of Untreated Syphilis. In the retrospective investigation, researchers examined medical records for men who contracted the disease but, for whatever reason, went untreated. 1920s Norway was not a racially diverse place, so the Oslo study focused entirely on white men. That only mattered because many American doctors believed that syphilis exhibited itself differently in people of different races. They asserted that it affected the nervous systems of white men and the cardiovascular systems of black men.
This belief was based on a harmful school of pseudoscience called “scientific racism.” For centuries, scientific racism was used to justify the poor treatment of African-Americans. Scientists argued that black men were ideal for slavery because of their strong physiques and simple minds. People argued that supposed differences in the central nervous systems allowed black people to withstand pain, therefore justifying severe physical punishment. Truthfully, the number of heinous claims made about African-Americans based on scientific racism are too numerous and bigoted to detail.
Still, many of these harmful ideas infiltrated beliefs about sexual health, beliefs that affected how the medical community treated sexually transmitted diseases.
White supremacists blamed higher rates of STDs in African-American communities on increased sexual appetite, lack of self-control, and extreme laziness that kept men from seeking treatment. Of course, this hypothesis ignored the fact that these communities received scarcely any resources for health and education. But, these ideas weren’t simply harmful because of their racism—they encouraged further atrocities like those that would occur in Tuskegee.
In the early 1930s, a white American man named Taliaferro Clark sought to conduct his own investigation into the living history of untreated syphilis in African-Americans. The study had a key difference from the Oslo study, beyond just the race of the participants. Clark’s investigation would be ongoing rather than retrospective. In other words, rather than scouring the records of men who had already gone untreated, his study would require that its participants continued to go untreated.
To Clark’s minimal credit, he did plan on treating the men after six months of research. But, this was not due to his views on equality. In fact, Clark perfectly articulated the racism that drove the study, stating that “the rather low intelligence of the African American population, depressed economic conditions, and the common promiscuous sex relations not only contribute to the spread of syphilis but the prevailing indifference with regards to treatment.”
Before the study began, one of its’ wealthiest financial backers pulled out. With the decrease in funding, Clark determined that they couldn’t afford to treat the men at any point. Yet, rather than allowing this to end the investigation, it was used as justification to extend its scope. Clark and his team asserted that the study wasn’t immoral because the men wouldn’t have been treated anyways. In the end, Clark stepped down before the study began, but his successor, Thomas Parran, espoused a similar mindset.
Under the direction of the United States Public Health Service (PHS), Parran chose Macon County, Alabama, as the investigation’s location. In the county’s largest city, Tuskegee, up to 35% of African-American men had syphilis.
In autumn of 1932, researchers canvassed Macon County with flyers offering special treatment for “bad blood” to African-Americans. At the time, bad blood was a colloquial term encompassing all sorts of medical conditions, from fatigue to anemia and syphilis. The posters claimed that free treatment was available to anybody, regardless of whether they showed any symptoms.
At this time, the local community was already justifiably skeptical about white doctors. So, the researchers took a handful of measures to attract participants. First, they hired an African-American nurse named Eunice Rivers. The degree to which Ms. Rivers was aware of her role in the process is unclear, but she played an important role. She acted as a trustworthy advocate, one of the few black people involved in the study. The researchers also offered free hot meals, physical examinations, and transportation to anybody who participated.
Over the following weeks, 600 men signed up to participate—399 had syphilis, and 201 did not. They were all sharecroppers and almost entirely uneducated. This was important to researchers, as it assured that the participants wouldn’t read about the study or learn of other treatments.
None of the affected men received any diagnosis of their condition. This meant that they unknowingly passed the disease on to sexual partners, who could then pass it on to their children. Despite promising free treatment, researchers gave the men ineffective medication or placebos to treat their perceived “bad blood.” These treatments were often minuscule amounts of drugs that were subtly related to actual syphilis treatment.
As the trials progressed, the research team determined that there was too much value to be gained by continuing the investigation until each man passed away, allowing the scientists to perform autopsies. Under this logic, the study would continue for the next 40 years.
One part of ensuring that it continued was ensuring that the men weren’t diagnosed or treated by doctors who weren’t involved in the study. So, the researchers traveled throughout Macon County, convincing doctors to withhold diagnosis from participants. Many of the community’s physicians agreed to follow along. In the most severe circumstances, Nurse Eunice Rivers accompanied participants on doctor’s visits to ensure that a diagnosis was never made.
With the onset of World War Two, 200 men from the study were drafted into the armed forces. During their pre-service physical examinations, almost all of these men were discovered to have syphilis. Yet, the research team again convinced the military physicians to bury any proof of the diagnosis. In a chilling quote, the study’s new director, a man named Vonderlehr, said, “this study is of great importance from a scientific standpoint. It represents one of the last opportunities which the science of medicine will have to conduct an investigation of this kind.”
By the mid-1940s, penicillin had been found to effectively treat syphilis, often curing the disease in a single injection. By ’47, the treatment permeated throughout America and was readily available to the masses. It seemed that the researchers had been given one final chance to admit their wrongdoing, end the study early, and offer free treatment to the men. But, of course, that didn’t happen.
As the study progressed, the PHS and CDC began to publish their findings. But, while some in the community praised the team for their results, others pointed out the obvious ethical issues. Throughout the 50s and 60s, PHS employees and outside physicians voiced their concerns within the medical community. In one chilling tale, a high-ranking PHS official sent a letter to the Tuskegee headquarters suggesting that the study be shut down. The letter was filed away without acknowledgment.
In the 1960s, another PHS employee named Phil Buxton voiced his concerns internally. Like the previous dissenters, his opinions were cast aside. But, rather than stay quiet, Buxton brought the information to the largest newsrooms in the country. Finally, in 1972, the New York Times and Washington Star put the story on their front pages, and the study was shut down soon afterward.
By the time of its’ ending in ’72, the consequences were severe. 28 patients had died directly from syphilis, 100 died from complications related to syphilis, 40 of the patients’ wives were infected, and 19 children were born with congenital syphilis. And yet, the terrible consequences of this travesty went far beyond those deaths.
The study exemplified the broad reach of systemic racism, displaying to the world that even in the supposedly trustworthy world of medicine, racial bias was thriving, and the consequences could be fatal. In some ways, this revelation still affects African-American communities today.
The Tuskegee experiment eroded any trust that black Americans had in the medical community. In the years following the bombshell revelation of the study’s atrocities, that lack of faith had disastrous consequences, as African-Americans sought less preventative medical treatment. Life expectancy for African-American men over the age of 45 fell by 1.4 years in the decades following the study. Researchers argue that that lack of preventative care stemmed directly from the seeds of distrust sowed in Tuskegee. For some African-American communities, trust has never been restored.
On a broader scale, the Tuskegee experiment further deteriorated the American public’s faith in their entire government. After the Watergate scandal and some embarrassing stories of CIA overreach, Americans of all races realized that the US government may not be the honorable establishment that it had long claimed to be. With the rise of HIV/AIDs and crack cocaine in the 1980s, especially in minority communities, much of the public blamed the federal government for these tragedies. In many cases, they were right. While Tuskegee was just one part of this series of atrocities, overall trust in American institutions has never fully recovered.
With Tuskegee, there was no silver lining. Any purported scientific value of the experiment was shattered in 1972. While the study sought to see the effects of untreated syphilis, researchers failed to accomplish this goal. Despite never effectively treating their patients, the doctors had given out ineffective amounts of actual treatment. Still, those inadequate medications may have affected the way that the disease showed itself. The study’s results had absolutely no value to the medical community.
Later in ’72, Senator Ted Kennedy called congressional hearings to investigate the gross violations of ethics perpetrated by the CDC and PHS. Of all the individuals involved in the process, no one faced any legal ramifications.
In 1973, the NAACP backed a lawsuit that led to a 10 million dollar payout to the victims of Tuskegee and their families. For participants who had been refused treatment for syphilis, the payout maxed out at 37,500 dollars, or about 200,000 dollars today. For families of those who died in the study, payouts were less than half of that total.
One final outcome of the study was establishing the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and the National Research Act. These changes were meant to ensure that medical treatment and research standards improved and required informed consent from all participants in any future studies. These standards were initially created in large part by American authorities at the Nuremberg trials following World War Two. But, while ex-Nazi doctors were severely punished for their misdeeds, the Americans running the Tuskegee study avoided any consequences for their violations of the Nuremberg Code. Tuskegee is not the only example of American institutions blatantly ignoring these moral standards, but it may be the worst.
It took 25 years for the US government to officially recognize and apologize for the atrocities at Tuskegee. In tandem with the apology, the government funded the new National Center for Bioethics in Research and Health Care at Tuskegee, which sought to improve issues for minority communities in health care. Finally, in 1997, with five survivors from Tuskegee at his side, President Bill Clinton formally apologized, saying, “What was done cannot be undone, but we can end the silence…We can look at you in the eye, and finally say, on behalf of the American people, what the United States government did was shameful and I am sorry. To our African-American citizens, I am sorry that your federal government orchestrated a study so clearly racist.”
So what do you think? Do stories like this affect the way that you view the medical research community? Or is it safe to finally assume that good ethics have pervaded that world? What would be an appropriate punishment for authorities involved in the study? What are similar examples of atrocities committed in the name of research and science?