The crossroads of medical ethics and human experimentation is often murky, but just about everyone can agree that "the voluntary consent of the human subject is absolutely essential", as established in the Nuremberg Code following WWII.
Between 1932 to 1972 the U.S. Public Health Services violated the basic rights of its human patients in a study that went on for forty years. The Tuskegee Syphilis Experiment was “the longest nontherapeutic experiment on humans in medical history” (James Jones), during which 600 black men became the unknowing victims of one of the most infamous breaches of medical ethics.
In the early 1930’s, the Great Depression and the rise of venereal disease (particularly syphilis) were major public concerns. Macon County, AL was one of the poorest regions in the country, with only one city (Tuskegee) in the entire county borders. Syphilis rates were very high in the area, but most citizens were unaware of what their disease even was. Most of the people who lived in Macon County were illiterate black sharecroppers who were unable to access or afford healthcare for themselves or their families. Therefore, when the U.S. Public Health Services offered medical treatment for “bad blood” to 399 black males from Macon County who were infected with syphilis, these individuals were delighted – many of them had never even seen a real physician before. Their highly disadvantaged socioeconomic status allowed the PHS to easily mislead and manipulate the men into compliance by promising them free medical exams, meals, and burial insurance in exchange for participation in their study.
Macon County, Alabama. Image by David Benbennick [Public domain], via Wikimedia Commons
What the study participants didn’t know was that the PHS had absolutely no intentions to cure them of anything and had completely misrepresented all aspects of the experiment. The actual name of the study was the "Tuskegee Study of Untreated Syphilis in the Negro Male” and its true aim was to examine the natural evolution of syphilis in African Americans. The only data the doctors were interested in were to be collected during autopsies of the study participants, who were deliberately left to deteriorate from the horrific symptoms of syphilis, which include tumors, heart disease, blindness, insanity, paralysis, and death. As one doctor involved with the experiment put it, “As I see it we have no further interest in these patients until they die.”
To keep up with the guise of their study the doctors had to provide some sort of treatment – at first. In the earliest stages of the experiment the men were given doses of bismuth, mercury, and neoarsphenamine, which were the only known treatments for syphilis at the time. But they were given such low doses that they were essentially ineffective, so as not to interfere with the true aim of the study.
Without treatment of any kind, the study participants began to die from the degenerative effects of untreated syphilis. Upon their death, doctors would perform an autopsy on the patient to collect data in adhesion to the true goals of the study. The autopsies were another fact the PHS had concealed from the study participants, knowing that most black people in the region would never agree to participate in the study if they knew that their remains would have to undergo a post-mortem.
A study participant receives a medical examination. Image from the National Archives and Records Administration [Public domain], via Wikimedia Commons
The lengths to which the PHS went to prevent the patients from receiving any effective treatment is truly unsettling. The names of the participants were distributed to local hospitals and doctors, who were instructed not to give the patients any treatment. Even after penicillin became the highly effective standard of treatment, the doctors deliberately denied the patients any access to the drug, instead giving them aspirin or other ineffective treatments while telling them they were receiving penicillin. During WWII when 250 participants were enlisted to be drafted (which would require them to receive treatment for syphilis) the Public Health Services intervened and exempted the patients. When national campaigns to fight venereal disease came to Macon County, the doctors prevented the patients from participating. The participants were never given any option to quit the study.
The participants of the Tuskegee Syphilis Experiment had no idea that they were not actually receiving any treatment for their disease until 1972 when an article in The Washington Post exposed the study. After public outcry, the government finally ended the experiment and gave the remaining patients effective syphilis treatment.
By time the study was ended, 28 of the participants had died from syphilis. 100 had died due to complications from syphilis. 40 of the patients’ wives had been infected with syphilis, and 19 of their children were born with congenital syphilis.
Subjects of the Tuskegee Syphilis Experiment. Image courtesy of the Department of Health, Education, and Welfare. Public Health Service. Health Services and Mental Health Administration. Center for Disease Control. Venereal Disease Branch (1970 - 1973)
For all the misery of the participants and their loved ones, no useful information had come of the Tuskegee Syphilis Experiment. After looking at the study results, one of the doctors involved concluded that “nothing learned will prevent, find, or cure a single case of infectious syphilis or bring us closer to our basic mission of controlling venereal disease in the United States.” In 1973 the surviving study participants and their families were awarded $10 million from the U.S. government after a class action lawsuit. In 1997 President Bill Clinton issued a public apology to the eight remaining survivors on behalf of the U.S. government. The last remaining patient from the Tuskegee Syphilis Experiment died in 2004.