Not informed of syphilis diagnosis

For 40 years, researchers failed to treat 200 African-Americans infected with syphilis. The vaccine scepticism seen today can be traced back to this experiment.

A Tuskegee Project researcher, a white man, takes a blood sample from a colored man outdoors.
Half of the patients in the Tuskegee study were only given a placebo and were tricked into thinking that the diagnostic procedures were treatment for ‘bad blood’. Photo: National Archives/NYT/NTB
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2021-2 The Magazine Research Ethics is an independent magazine on research ethics and research integrity published by the National Research Ethics Committees (FEK) in Norway. ISSN digital edition: 2387-3094.

The Tuskegee Study of Untreated Syphilis is regarded as possibly the worst example of unethical research in US history. 
In Alabama in the 1930s, syphilis was widespread among poor black sharecroppers. A total of 399 men with syphilis were invited to take part in an experiment, with the promise of free medical care and a hot meal when they arrived for the ‘treatment’. They were also offered a free funeral. 
The participants were not informed of their syphilis diagnosis, and were told they were being treated for ‘bad blood’, a term they themselves used to refer to a number of ailments. 
Half of the research subjects received treatment for syphilis. The others were tricked into thinking they were receiving treatment, but in reality only underwent diagnostic procedures and testing, such as spinal taps.  

Journalist blows the whistle 

The only treatment for syphilis at the time was Salvarsan. Despite not being very effective, this organoarsenic compound was the prescribed method of treatment. 

  • The experiment started in 1932 at Tuskegee University, Alabama. 
  • It included 399 black male workers with syphilis plus a control group without syphilis. 
  • The participants with syphilis were not informed of their diagnosis but were told they were being treated for ‘bad blood’. They were given a placebo and tricked into thinking that the diagnostic procedures were treatment. 
  • The experiment continued until 1972.  

Sources: Centers for Disease Control and Prevention; Associated Press; The White House

During World War II, penicillin was introduced, which is highly effective in the treatment of syphilis, but none of the participants in the experiment were offered such treatment. On the contrary, the researchers worked actively to prevent them receiving penicillin for other infections as this would ruin the experiment, which continued until 1972. 
It was Jean Heller of the Associated Press who broke the story of what the researchers were up to. She had received a tip from a whistleblower. Only then did the authorities step in and end the experiment. A public commission made it clear that the experiment had been unethical from the start, and particularly so after the introduction of penicillin.  

Fear of the COVID-19 vaccine 

By then, 28 of the research subjects had died of syphilis and around 100 of related complications. Forty of the men’s wives were diagnosed with syphilis, and 19 children were born with the disease. The number of people infected following extramarital affairs is still unknown. 
The research subjects and their families received USD 9 million in compensation, and a health programme was introduced to monitor them. The last surviving participant died in 2004, and the last widow in 2009. Ten of the participants’ children are still receiving free health care. 
This tragedy is still in the forefront of the minds of many black Americans. A number of US media outlets have recently reported that this is the main reason why uptake of the COVID-19 vaccine has been lower among black Americans than their white counterparts. 
Cheryl Owens, a registered nurse, tells NPR (National Public Radio) that many people she talks to are afraid to take the COVID-19 vaccine. 
‘When I ask why, they answer: “You no doubt remember the syphilis experiment?”’ 

Norwegian roots 

The Tuskegee Study of Untreated Syphilis had a Norwegian predecessor. At Rikshospitalet’s dermatology department, patients were not given drugs to treat syphilis between 1891 and 1910 (see the fact box) because the head of department, Professor Cæsar Boeck, believed that the side effects of the mercury treatment in use at the time were worse than the harmful effects of the disease. 

  • Between 1891 and 1910, a total of 1,978 syphilis patients at Rikshospitalet’s dermatology department received no drug treatment, only rest and a nutritious diet. 
  • Detailed observations were made of the clinical course of the disease in the untreated patients. 
  • The experiences from this study were subsequently an important basis for the Tuskegee study.  

Source: Journal of the Norwegian Medical Association; NRK 

Boeck described the patients’ course of illness in great detail. His journals form the basis for current knowledge of the clinical course and prognosis of syphilis infections. Since Boeck had no control group receiving treatment, it is not possible to know whether the treatment of the day did indeed do more harm than good. 
In 1927, Boeck’s successor at the department of dermatology, Edvin Bruusgaard, published a study based on Boeck’s material. 
The connection between this study and the Tuskegee experiment is discussed in an article published in the Journal of the Norwegian Medical Association (Ubehandlet syfilis – fra Oslo til Tuskegee) in 2016 by Anne Helene Kveim Lie, associate professor of medical history at the University of Oslo, and Anniken Sandvik, a doctor and historian. 
Kveim Lie told NRK that without Bruusgaard’s study, nothing would ever have come of the Tuskegee experiment.  

New treatment given 

In 1910, Salvarsan was introduced to treat syphilis. The drug attacks the syphilis bacteria and does not cause as much damage to the rest of the body as mercury. Boeck immediately ended his trial and gave the patients Salvarsan instead. 
Today, there is no controversy surrounding the claim that earlier mercury treatment, which was used for various diseases, often caused more harm than the disease itself. Boeck has not therefore received criticism for failing to give the patients this treatment. But he helped lay the foundation for the roundly condemned Tuskegee experiment, and there was considerable contact between Norwegian researchers and those leading the experiment in Tuskegee. 
In 1955, Trygve Gjestland wrote a doctoral thesis based on Boeck’s and Bruusgaard’s material. The thesis has been named The Oslo Study. He received funding from the US health authorities, not least because several of the researchers involved in the Tuskegee experiment showed great interest in his work. As part of a student exchange in the United States between 1951 and 1952, Gjestland visited Alabama, and researchers working on the Tuskegee study sought his advice. 

Built on racial biology 

Americans were interested in whether syphilis affected black people in a different way to white people. This was one of the reasons why they were so interested in the material from Oslo. They believed that the black population had a less developed neurological system than the white population, and since syphilis can also attack the nervous system, they believed that the clinical course of the disease would differ between the two populations.

  • The vaccination rate is 1.3 times higher in the white population than the black population. 
  • Black people are more prone to get sick and die from COVID-19 than white people. 
  • The low vaccination rate in the black population can also be due to various social reasons other than vaccine hesitancy. 
  • The vaccination rate gap between the white and black populations has been decreasing. 

Source: Kaiser Family Foundation (KFF) 

The Tuskegee Study of Untreated Syphilis was therefore not only a racist experiment in terms of how the research subjects were treated; it was also built on the concept of racial biology, where black people were regarded as less developed than white people. 
In 1997, President Bill Clinton issued an official apology, calling the experiment shameful and racist. 
Sources: Journal of the Norwegian Medical Association; NRK; Centers for Disease Control and Prevention; Associated Press; U.S. Department of Health, Education, and Welfare; The White House, Office of the Press Secretary; National Public Radio (NPR); Wikipedia