In the early years of the twentieth century, one of the world’s worst human rights violations in research occurred in the name of the Tuskegee Syphilis study. The study was conducted in Macon County, Alabama. Most ethical codes of conduct of the IRB were terribly broken. One might defend the American Public health service, by saying that there was no prior international standard given but all in vain. Clearly the black race got something that had never been fathomed before. In 1932, doctors and officials working in the U.S. Public Health Service deliberately infected 400 men with syphilis spirochetes and kept some 200 others as controls. They research project continued quietly, giving its first report in 1936 and then every four to six years (Fourtner, Fourtner, & Herreid, 2000).
Later on in the 1950s penicillin the remedy for syphilis was approved for use and became widely available as authentic therapy for anyone suffering from syphilis. Nobody bothered to give this needed remedy to the participants in the study. The researchers all kept their mouths shut! What is even worse is that the USPHS on many occasions did its best to prevent treatment! To add insult to injury, a federal committee at the Centre for Disease Control authorised the continuation of the study in 1969.
At the brunt of the press release of the details of the study in 1972, the Department of Health, Education and Welfare decided to stop the experiment. Over 100 men in the study had already died from advanced syphilitic lesions at that time, only 72 were still alive. Nothing was done to ensure that no such thing could happen again. At least not until 1992, when the Department of Education and Welfare appointed a panel to investigate the Tuskegee study. That panel filed a report the following year concluding that the study was ethically unjustified and that penicillin should have been given to the men at its discovery and availability in 1950s.
Some people have argued that the motives of this study were not entirely misguided since, for one Macon County had a very high prevalence of syphilis at that time. That the study, began as an observational study. This could be true, but therapy should have been given to in the 1950s when it became available. Also according to the Nuremberg code, Informed consent is an essential part of any research. This was not provided to the men. In order to achieve informed consent, one must have freedom from coercion, capacity to consent and understanding of the risks and benefits involved (IRB, 1993). It is easy for anyone to understand that the participants of the study were coerced with promises of monetary benefits to their next of in “in case they died.” They were never told of the risks involved and if they were, they did not have the capacity to consent. As r Thomas W Murell wrote, “…but tell them not, though they look well and feel well, that they are still diseased. Here the ignorance rates science a fool… (Brandt, 2013)” It is clear from this quote that the black men were ignorant of the pathogenesis of the disease. Yet they were used as guinea pigs to research the natural history of Syphilis. The other requirements of the Nuremberg code, for minimization of risk and harm, and favourable risk benefit ratio were not met. Their freedom as participants in the research to withdraw anytime as long as they desired was not given neither.
Given a chance I may have conducted the Tuskegee study differently. First I would respect the right to have informed consent. In order to ensure this, the black men would all have to be educated well about syphilis and the risks that they would be putting themselves into plus any benefits expected. Again I would never have restricted the study to blacks only because that gave rise to bias based on race. Then everyone in the programme would be given the freedom to choose whether to continue or to drop out whenever desired. Lastly the control group which seems to be half of the cases group would have to be widened to allow a balance between the control and the cases. This can only mean that I would have 400 controls, as opposed to the 200 cases.
Nonetheless, it has happened, and the IRB was set up to make sure that no such ethical violation occurs ever again.
- Brandt, A. M. (2013, November 10). Racism and Research: Case of the Tuskegee Syphilis Study. Retrieved November 10, 2013, from Dash.Harvard.edu: http://dash.harvard.edu/bitstream/handle/1/3372911/Brandt_Racism.pdf?sequence=1
- Fourtner, A. W., Fourtner, C. R., & Herreid, C. F. (2000, February 24). Bad blood: A case study of the Tuskegee Syphilis project. Retrieved November 10, 2013, from Sciencecases.lib,Buffalo.edu: http://sciences.lib.buffalo.edu/cs/files/2-bad_blodd.pdf
- IRB. (1993). the History of the human subjects protection system. Retrieved November 10, 2013, from hhs.gov: http://www.hhs.gov/ohrp/archive/irb/irb_introduction.htm