Tuskegee: A stigmatized Chapter in Medical Research

16 May 1997, White House.

Five elderly black men from Alabama have arrived in the East Room of the White House. The residence of the US President. The then US President William Jefferson Clinton took a brief look at them and stood on the designated podium. He formally apologized for one of the longest medical research or non-therapeutic experiments in human history, the Tuskegee Syphilis Study. Which took place without drugs. We will know about Tuskegee: a stigmatized chapter in medical research.

Five of the eight survivors of the study were physically present. Clinton said in her speech:

“It simply came to our notice then. There is no way back, and there is no way to bring back the people who lost the families of the volunteers who dragged the stigma of years of scandalous research back. But on behalf of the American people, as President, I humbly acknowledge what happened. It is a shame and should never have happened. “

Tuskegee

Tuskegee is a small town in Macon County, Alabama. A scientific study started here in 1932. The volunteers were black men with syphilis. The main objective of the study, was conducted under the auspices of the US Department of Public Health. Was to monitor the progression of syphilis in the human body without any medication. It was hoped that the results of this observation would provide information on syphilis, which could be used to prevent and cure the disease.

It is safe to say that although penicillin was discovered, it is still a few years away from being marketed as an antibiotic. As a result, the era of antibiotics did not begin. So there was no treatment for syphilis at that time. So this research was very important to the Department of Public Health. Although it was supposed to run for six months at first, the test stopped at forty years.

Tuskegee’s context

Only black people were included in the Taskeji study. The reason for this was the misconceptions about blacks in society. Although slavery was abolished a long time ago, in the United States, segregation based on skin color was widespread. Not only uneducated and poorly educated whites but also many highly educated people. Doctors, engineers, and scientists have been swept away in this current.

Many scientists sought to scientifically establish the superiority of white people by classifying them based on skin color. Charles Davenport, a well-known scientist at the time, claimed that the darker the complexion. The greater the tendency to commit crimes such as burglary robbery kidnapping murder, and rape.

In this way, many people used to say that the manifestation of different diseases will be different between white and non-white people. Among the many diseases, doctors had a special interest in syphilis. Until then, large-scale research on syphilis had been conducted only on whites in Oslo, Norway. US physicians wanted to uncover the effects of syphilis on blacks. Behind this, their misconceptions about the structure of the human brain also play a helpful role. A stage of syphilis – neurosyphilis attacks our central nervous system. US physicians and scientists thought that the brains of blacks were much less developed than those of whites, so perhaps neurosyphilis was not capable of causing much damage to their central nervous system.  

Syphilis is a sexually transmitted disease. US physicians, without any evidence, believe that almost all blacks are polygamous because of their biological appetite. As a result, the incidence of sexually transmitted diseases, especially syphilis, is higher among them. It was said that more than fifty percent of black people over the age of twenty-five had syphilis. However, no research has been done to find out these figures. The American medical community was interested in working on blacks with syphilis from these conventional ideas. As a result, the US Department of Public Health took the initiative.   

Rosenwald research

In 1929, with funding from the Julius Rosenwald Fund, the US Department of Public Health sought to conduct a study of syphilis in the southern states of the United States. Their goal was to find out the rate of syphilis among blacks. The survey found the highest rate in Macon County, Alabama, conducted in six counties.

This study was known as the Rosenwald Study. One of the researchers was Dr. Taliafero Clark, an official from the Department of Public Health. The researchers concluded that conventional treatment of syphilis on a large scale among blacks would be beneficial. Therefore, the next step of the research was to be prepared. But the Great Depression of 1929 stopped everything.

The beginning of new research

Alabama is a county macon. One of its cities is Tuskegee. It was known as one of the poorest cities in the United States at that time. A large portion of the city’s population is African-American. Their daily income is about one dollar per capita. They are also far behind in education. As a result, there is an opportunity to include them in the research by misinterpreting money and showing material greed. The US government took this opportunity.

In 1932, Dr. Clark was the head of the Department of Sexually Transmitted Diseases in the Department of Public Health. He said the high rate of syphilis among blacks in Macon County provided them with an excellent opportunity to observe the nature of the disease. He knew that none of the victims could afford any treatment for their poverty. As a result, valuable information about uncontrolled syphilis was obtained by observing them. 

Macken County was a natural research center for Clark. He also sought approval for new research, citing the alleged inferiority complex of blacks, their economic woes, and free sex. Although there was supposed to be a protocol or a written proposal for any scientific research. Nothing was done for Tuskegee. Only a few letters circulated between Clark and another of his colleagues, Cummings, shed light on the purpose of the study.

According to Clark, a total of 600 people between the ages of 25 and 60 were needed for the test. 400 will be syphilis patients, and 200 will act as controllers. Dr. Raymond Tuskegee arrived in September 1932 to recruit enough volunteers for the test.

Volunteer collection

He was a partner in the project at the Tuskegee Institute. This institute was established to teach the education of free slaves. African-Americans were the main culprits. The Tuskegee Institute established its own hospital in 1891 and a nursing college in 1921. They take care of the physical examination of the volunteers and the autopsy of the dead. For this, they get a lot of money from the government. They also hired a black nurse named Eunice Rivers for the research.

Even though so many ghats were built, there were some problems with volunteer collection. Although Dr. Raymond campaigned for people to do research, many blacks believed he was actually trying to send them to the military for a medical examination. So the response from them was not as expected. This forced Dr. Raymond to include many people in the study who did not fit in.

The people involved in the study were not told the details of the test. They were told they would be given free treatment if they were sick and enrolled in the study. If they die, they will pay for their burial. It was like getting the moon in the sky for the poorest blacks. However, it is against the principles of scientific research to hide information from volunteers and lure them in this way. Today there can be jail fines for this.

Original research

Dr. Rayler replaced Dr. Raymond in 1933. Talking about treatment, they were deliberately giving some useless medicines to the syphilis sufferers. The main purpose of their research was to observe the nature of the disease without drugs. However, the participants were in complete darkness about it. Researchers use a variety of methods to prevent them from receiving treatment elsewhere.

In 1934, officials from the Department of Public Health met with local black doctors. A list of test participants forbade them to give any treatment for syphilis. In 1940, the Alabama government launched a mobile lab to test syphilis patients. The US Department of Public Health also barred there so that no one from the Tuskegee Study could take advantage of the lab.

When World War II broke out, he invited to join the army. Many of those who took part in the test went to the army for medical check-ups and were asked to take treatment for syphilis. A list of 256 people included in the study was then sent to the Army Board by the Department of Public Health. These 256 people were discharged from military service. The army also deprived them of their right to medical treatment.

One volunteer traveled to Birmingham for medical treatment. But after receiving phone calls from Tuskegee’s researchers, the hospital sent him back. After 1942, penicillin revolutionized medicine, and its effectiveness in treating syphilis demonstrated. But the Tuskegee research volunteers were also kept in the dark about this. It may have been possible to save many of them by using penicillin. But they were not given the opportunity, thinking that the test’s purpose might be disrupted.

Data from the Tuskegee Study have been published regularly in scientific journals since 1936. Although no new information came after the first few articles, the test was still going on. Meanwhile, at the end of World War II, a court was set up in Nuremberg to try Nazi war criminals. Several were tried for inhumane treatment of detainees in Nazi concentration camps. From here, the judges introduced some of the principles of medical research, namely the Nuremberg Code. Although the Tuskegee study contradicted every principle, the US government did not change its mind.

In 1964, the Nuremberg Code was issued by the World Medical Association Declaration of Helsinki. Which emphasized the rights of participants in medical research. But the US Department of Public Health has carried it! They continued the study, which began with blacks as lower-class people, on the same pretext. The ongoing US civil rights movement for the rights of blacks has not waned.  

Completion of research

This unethical study has been going on in Tuskegee for decades. Is hidden from the eyes of the American public. Gomer was leaked in 1972. Peter Buxton, a CDC employee, told a journalist friend about Tuskegee. The news published in the newspaper on July 26 caused a stir in the whole country. For 40 years, black syphilis patients have been criticized for being deprived of treatment in the name of research. And for incorrectly incorporating them into the study.

The US Department of Public Health came under pressure. They were forced to end the test. By then, about 70 of the study participants had survived.

Investigation and compensation

In 1973, the US Senate, led by Edward Kennedy, a young Massachusetts senator, reviewed the Tuskegee study. A commission was formed on the recommendation of the Senate committee to fix the rules of medical research. The report of this commission in 1979 is known as the Belmont Report. Learning from Tuskegee, strict rules of medical research are laid down here. Where the safety and medical rights of volunteers were recognized. Therefore, it is mandatory to pass all research proposals from an ethics committee.

In 1974, 37,500 was paid to each of the 70 survivors on a case-by-case basis. 15,000 is allocated to the families of the dead. In 1997, President Clinton publicly acknowledged the government’s responsibility for Tuskegee and apologized.

The last word

It is a wonder how a department government department out an unethical study like Tuskegee for a long forty years. The study, which began by considering blacks as inferior, was at the outset. It then violates every study principle, such as misrepresenting participants. Deliberately keeping them out of medical care, and showing utter disregard for their safety and human rights. In today’s law, this research will fall into the category of major crimes. However, as a result of Tuskegee. The issue of ethics and the rights of volunteers in medical research came to the fore once again. The Belmont Report became the standard for medical research in the United States. In line with the International Research Policy (ICH-GCP), it is now possible to prevent the recurrence of Tuskegee.