In 1912, the U.S. Public Health Service (PHS) acquired its name and modern mission when Federal legislation gave it the authority to “investigate the diseases of man.” Over time, the PHS expanded its role by taking on all aspects of public health, including medical research and disease prevention. By the 1930s, the PHS also was coordinating State and local health departments to tackle the spread of sexually transmitted diseases such as syphilis.
Syphilis is a bacterial infection transmitted through sexual intercourse. Different symptoms appear and disappear as the disease progresses through several stages.
Within three weeks of infection, small painless ulcers form in the genital area. Although the ulcers fade in a few weeks, rashes appear next on the palms of the hand and the soles of the feet. Over time, lesions (i.e., sores) spread across the back and throughout the body. Depending on severity, other symptoms may include fever, headaches, weight loss, sore throat, and fatigue.
At one time, syphilis infected about one million people annually. If untreated, syphilis can spread throughout the body, causing blindness, memory loss, mental illness, heart disease, or death.
Before penicillin became widely available in 1944, treatment for syphilis involved injections with arsenic compounds. Topical skin applications of poisonous heavy metal ointments, such as bismuth and mercury, also were prescribed.
By the early twentieth century, syphilis was a public health threat. According to the National Institute of Allergy and Infectious Diseases, a cure for syphilis was difficult because the disease had “so many possible symptoms, and its symptoms [were] similar to” many other diseases.
Although the PHS has long been blamed for what happened at Tuskegee, the agency did not invent the experiment. In reality, it was inspired by a long-running research project conducted in Oslo, Norway, between 1909 and 1928. In that study, white males with syphilis were recruited and observed for nearly two decades. As Norwegian scientists wanted to characterize the disease as it advanced, study participants never received medical treatment.
Due to racial attitudes in the United States, syphilis was thought to act differently in black males than in Caucasian males. As the role of the PHS included preserving the health of all races, further research seemed necessary.
In 1932, the PHS commissioned a study through the Tuskegee Institute to investigate the progression of untreated syphilis in African American males. Macon County, Alabama, was selected as the study location for three reasons.
All sharecroppers received a letter from the Tuskegee investigators, in which they were deceived into thinking that they would receive free treatment for ‘bad blood’ if they joined the study. In fact, the African Americans received no treatment at all — except for painful lumbar punctures to test their spinal fluids for infection.
Investigators recruited about 600 subjects: 400 males with syphilis and 200 males without syphilis (who served as controls). The study was intended to last 6 months; in the end, it lasted nearly 40 years.
According to Fairchild and Bayer (1999), even when penicillin was known as an effective cure for syphilis by 1944, the investigators continued to withhold treatment. In addition, they also blocked attempts by some sharecroppers to obtain treatment elsewhere.
The rationale for denying penicillin was based on a ‘standard of care’ argument. As the sharecroppers were too poor to buy penicillin on their own, they lost nothing by participating in a study where penicillin also was withheld. Thus, the ‘standard of care’ in Macon County was defined as ‘no care at all.’
The PHS has been accused of conducting the Tuskegee Study in secret. Between 1936 and 1974, however, 13 articles about the study were published in reputable journals. None of the articles concealed the fact that the study participants were being untreated. The medical community outside of Macon County was well aware of what was going on at Tuskegee. The general public probably did not know, and the subjects have always claimed to be unaware that they were being experimented upon.
Anywhere from 28 to 100 African Americans died during the study as a direct result of being untreated. It is unknown how many surviving infected males passed along syphilis to their partners, or to their unborn children.
The Tuskegee Study did not end with the Nuremberg Code of 1947, but continued for another 25 years. In 1969, the U.S. Centers for Disease Control and Prevention (CDC) discussed whether or not to end the experiment. Although one physician is known to have objected to continuing, he was overruled and the project continued for three more years.
On July 26, 1972, the New York Times published an exposé about the study, which created sufficient public outrage to halt an experiment that had been ongoing for 40 years without the consent of the study participants. To this day, Freimuth et al (2001) estimate that 22% of African Americans use the Tuskegee Study as the main reason for distrusting investigators, or for refusing to participate in clinical trials.
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I was a healthy soldier of just 21 years old. I didn't know why I was so tired all the time, so I just chalked it up to long military days and planning my upcoming wedding. But when the fatigue and slight yellow tinge to my skin caught the attention of one of my superiors, I knew had better get checked out.