II. A Brief History of Research Ethics Violations and Regulation

The infamous Tuskegee Syphilis Experiment proved that the Nuremburg Code wasn't enough to prevent abuse of research participants by medical researchers.

The experiment ran from 1932 to 1972. The research subjects were poor African American men, sharecroppers in Alabama (a southern state in the U.S.). They were coerced by various means to participate in the research. For example, they were told that having painful spinal taps was a "last chance free treatment" for disease, when it was not a treatment at all.

The men in the experiment were told they were being treated for "bad blood." In fact, they were only observed to watch the progression of the disease. The doctors never treated them at all.

Reference: http://www.tuskegee.edu/Global/story.asp?S=1207512
See also: James H. Jones, 1993. Bad Blood: The Tuskegee Syphilis Experiment. Free Press. 


p7b Participants in the Tuskegee Syphilis Experiment. source: National Archives and Records Administration.

When the experiment started in 1932, there was no complete cure for syphilis, but there were treatment programs that were known to help, involving bismuth, neoarsphenamine, and mercury. But during the Tuskegee Syphilis Experiment, these treatments were withheld from the participants, or given in doses so small as to be ineffective.

Even when penicillin, a cure for syphilis, was discovered in the 1940s, participants in the Tuskegee syphilis trials were never told or treated. In fact, they were actively prevented from receiving treatment so that doctors could continue to watch the progress of syphilis.

By the end of the trial, "28 of the men had died directly of syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children had been born with congenital syphilis."[2] In other words, even though they were not deliberately infected with diseases by researchers, as the Nazi experimenters had done, the fact that researchers deliberately withheld treatment meant that not only did the men in the study suffer for decades, others who were infected by them also suffered and were disfigured by the disease.

[2] http://www.tuskegee.edu/Global/story.asp?S=1207512

p8Participants in the Tuskegee Syphilis Experiment source: National Archives and Records Administration

There was no scientific benefit from the study. Simply watching how the disease progresses did not help to find a cure for syphilis, and it did not help reduce the spread of venereal disease.

The Tuskegee Syphilis experiment has had a far-reaching impact on much more than just the health of the men involved. The "Legacy of Tuskegee" is that many African-Americans distrust white doctors and the government:

"In 1990, a survey found that 10 percent of African Americans believed that the U.S. government created AIDS as a plot to exterminate blacks, and another 20 percent could not rule out the possibility that this might be true. As preposterous and paranoid as this may sound, at one time the Tuskegee experiment must have seemed equally farfetched.

"Who could imagine the government, all the way up to the Surgeon General of the United States, deliberately allowing a group of its citizens to die from a terrible disease for the sake of an ill-conceived experiment? In light of this and many other shameful episodes in our history, African Americans' widespread mistrust of the government and white society in general should not be a surprise to anyone."[3]

[3] http://www.tuskegee.edu/Global/story.asp?S=1207512