The Tuskegee Experiment is considered the biggest medical scandal in US history. By 1972, 399 people with potentially fatal syphilis were untreated. The decisive lesson from the state-ordered, painful death has not lost its importance to this day.
Among blacks in the USA, the corona vaccination rate is in many places lower than in other population groups. In addition to a general distrust of the government and health system, according to US media reports, one reason is a cruel experiment that was uncovered 50 years ago: the so-called Tuskegee study. People were left on an often horrible road to death by government doctors. “The crucial lesson from the Tuskegee study is that the conscience of the researcher is far more important than all the regulations in the world,” emphasizes intensive care and pulmonary medicine specialist Martin Tobin in the “American Journal of Respiratory and Critical Care Medicine”.
The Tuskegee Study of the Public Health Service, an agency under the US Department of Health and Human Services and the forerunner of today’s CDC, began in 1932. 399 African American men infected with syphilis in the small town of Tuskegee, Alabama, were deliberately and without their knowledge being denied effective therapy. 201 uninfected men formed the control group. The aim was to observe the progression of the disease and its late effects. An autopsy was performed on the deceased. Scientific value of the study: zero. The horrible consequences of syphilis had been known for centuries.
Dozens of the men suffered and died from the disease, although they could have easily been cured. The study was not completed until 1972, after the young social worker Peter Buxton informed the media about the inhumane experiment, which reported widely. Previously, the employee had tried in vain for years to get the authorities to stop the study. The American public was horrified, and Congress introduced regulations governing the conduct of medical research. There were no penalties for those responsible.
It was only in 2010 that it was revealed that the same group of researchers intentionally infected hundreds of Guatemalans with syphilis and gonorrhea in the 1940s in order to develop better ways to prevent these infections, adds Tobin, a professor at Loyola University of Chicago in Maywood, in his post. They too suffered terrible torments, and many died.
When human testing began in the Tuskegee area, syphilis was still one of the most feared diseases in the world, Tobin said. It was estimated that one in ten Americans had the disease in the early 20th century. It is a chronic, sexually transmitted disease caused by the bacterium Treponema pallidum. If left untreated, the skin and organs can be massively affected, forming rashes, lumps and ulcers. In the final stage, the central nervous system is destroyed – with terrible consequences for those affected, such as paralysis, attacks of pain, blindness and progressive loss of mind, which also means an immense burden for the relatives caring for them.
Tobin says treatment options have been available since the 1920s, but the men in the Tuskegee study—mostly poor farmhands living in conditions similar to slavery—were denied them for decades. Women were infected, who in turn gave birth to dead or infected babies. The researchers involved were aware of the unspeakable suffering and accepted it.
As a physician who has himself been researching patients for more than 45 years, he wonders how physicians and scientists could convince themselves that it is morally acceptable to conduct disturbing experiments on ignorant people, said Tobin, who is also a Hines Veteran Affairs Hospital works. The study was also not conducted in secret: the US health authority CDC reported on the terrible complications of untreated syphilis in 15 articles that were presented in high-profile medical journals. “But not a single doctor anywhere in the world published a protest.”
“So it’s not just about American doctors. It’s not just about the CDC, it’s about the entire medical community around the world,” Tobin said. There were still questionable studies afterwards – for example on the treatment of HIV, in which pregnant women in Africa in the control group were given a placebo instead of the effective drug that prevents transmission to the newborn. “You always have to be on your guard,” Tobin is convinced. It is naïve to believe that something terrible cannot happen again. “And we must not be so naive.” There will always be unethical studies – as well as those involved who do not think, but blindly follow the guidelines.
Precautions and rules like those developed following the reports of the Tuskegee experiment in the US are very important. The most important thing, however, is that a researcher or doctor thinks about ethical questions himself and also addresses them, emphasizes Tobin. “Silence can be deadly.”
One should not be too convinced that oneself, if necessary, will make the morally correct decision in any case. It is much more likely to follow in the footsteps of the many silent doctors and scientists involved in the Tuskegee study than to be the one Peter Buxtun in over 40 years who courageously questions the system and also endures hostilities for it. After all, there is a risk of trouble with superiors or even the loss of a job and career.
So-called human challenge studies in Great Britain caused a stir last year. Young volunteers were specifically infected with corona without prior protective vaccination. “The Human Challenge program will improve and accelerate the development of vaccines and treatments against Covid-19,” the British government said.
Critics pointed out that long-term damage from Covid-19 cannot be ruled out, even in young, healthy people. People are deliberately put at risk even though there are alternatives. At that time, thousands of people were infected with Corona every day in Great Britain alone, and the analysis of their data brought a number of new findings, without the intentional infection of people.
It was not until February that the first interim results of the human challenge analyzes were presented – which, however, were already out of date because completely different variants of the virus were now circulating. Originally, the scientists had hoped that their research would speed up the development of vaccines. But these were also used with classic clinical tests at record speed.
The example shows: Ethical issues remain topical. Tobin emphasizes that blindly following everyone else is not an option for doctors and scientists. ‘Obviously, if someone is a researcher and believes that the research they are involved in is unethical, they have a moral obligation to investigate it or patients will be harmed.’
Reflecting on things, examining one’s own conscience, having the courage to speak out and “above all the will to act” are of central importance in all areas of life, emphasizes Tobin. Being aware of events like the Tuskegee study is the “best defense against future mistakes and transgressions”. In April 2021, lung specialist Tobin served as the prosecutor’s witness in the criminal trial of a police officer who killed George Floyd in Minneapolis in May 2020. He is convinced that structural racism is still a problem in the USA, including in the healthcare sector.
An analysis just published in the “Journal of the Royal Society of Medicine” shows that racism and ethnic discrimination in health care affect the willingness of ethnic minorities to be vaccinated. Many people from such groups in the UK who refused vaccination had experienced racial discrimination in a medical setting since the pandemic began. Racial discrimination in the healthcare system leads to less confidence in the healthcare system among those affected, and as a result the corona vaccination is more often refused, explain the researchers led by Elise Paul from University College London.
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