You may know what syphilis is from a quick search on google, but what you don’t know how most of the information we have on syphilis was made possible due to a study conducted in the late 1920-30s, which took place in Macon County, Alabama, at the campus of Tuskegee Institute. Known as the Tuskegee Syphilis Study, it was first designed to study the natural record of Syphilis in the African-American population of Alabama. During this time, an estimated 35% of poor black men residing in the southern parts of the United States were infected with this STI, which significantly impacted their work and contributions to society due to the lack of treatment available at the time. This study was originally known as the “Tuskegee Study of Untreated syphilis in the Negro Males” (Tuskegee University, 2020).
However, this study was conducted in a highly unethical manner which caused the benefits that resulted from it to be substantially outweighed by the costs that the participants had to bear. Through the analysis of this study, I aim to show that it broke all the rules of today’s ethical principles in research methods causing such a study to never take place in today’s world.
The study included a total of 600 participants, out of which 399 men who had Syphilis were part of the experimental group, and the rest who did not have this infection were a part of the control group. These were poor and illiterate men who had never experienced being treated by doctors. In fact, there is not enough evidence that these men were told that this study had anything to do with syphilis at all. As far as they were concerned, they were being observed and treated for “bad blood”, as the local people referred to illnesses like nausea, fatigue, anemia, etc. (Fourtner, Fourtner, & Herreid, 2000).
It was years later when this study was finally put to an end, when Jean Heller of Associated Press broke out the news about this highly controversial study on July 25, 1972. This led to a wide-scale international public outcry, which demanded the cessation of the study. A panel was appointed by US federal agencies that reviewed this study and concluded that it was substantially unethical and unjustifiable, thus ending it effectively (CDC, 2015).
There are several factors that led to the conclusion that the Tuskegee Syphilis Study was ethically unjustifiable. Let’s look at them one-by-one.
This study was unethical from the very moment when the researchers lied and deceived these men by not telling them what this study was actually about. Though they were told that they were receiving free treatment, they actually never received any sort of treatment for syphilis, even when penicillin became available in 1947. In fact, at no point did the Tuskegee Institute ever inform the participants about this novel cure for syphilis, who were left to suffer for the study’s benefit.
This eventually led to these men gradually progressing through the stages of syphilis until they died. As a result of this deception, the participants also went on to transmit this disease to their partners which eventually lead to an increase in the cases of congenital syphilis in newborns. This study directly went against the Nuremberg Code of Ethical Principles established following World War II to guide the ethics of medical research and practice. To summarize, these participants were lied to, had their opportunities taken away, and denied the option of being treated (Morling, 2018).
Unfortunately, that is not all. These men were never treated with respect. Their freedom to make an informed decision about their participation in the study was taken away from them, thus denying their right of informed consent. Even after their deaths, their families were only provided with burial insurance to ensure that the researchers would be able to conduct autopsies on their body. These men were harmed deliberately by subjecting them to extremely painful and perilous tests. Even though Syphilis is known to affect people from all societies, cultures, and backgrounds, the PHS personnel knowingly targeted a disadvantaged racial group (Paul & Brookes, 2015).
Though I agree that we have received a lot of information about this infection as a result of this study, it still does not justify the harm caused due to the denial of treatment options for decades. Additionally, the fact that peripheral trauma still causes members of the racial group who were not directly affected by this study to have adverse implications of health is another reason why this study cannot be justified. This study has a direct correlation with the decrease in health-seeking behavior, especially in the older population, a decrease in life-expectancy by at least 1.4%, and an increased medical distrust of people who were not a part of this study (Alsan, Wanamaker, & Hardeman, 2020). In another study conducted by Shavers, Lynch, and Burmeister (2000) to calculate the impact of this unethical experiment, 51% of the African-American population showed distrust of the medical system and indicated fear in participating in future research practices.
It is harebrained to think that a study like this could be conducted in today’s world. Today, we are highly influenced by the Belmont Report that outlines the ethical principles that all researchers must be sure to follow. This included the principle of respect for all people, which demands that all individuals should be provided with an opportunity to make up their minds about participating in the research after they are privy to all information regarding the same. This way, the subject can give an informed consent after weighing the pros and cons of participation. At no time can we mislead, lie to, or deceive participants like the manner of the Tuskegee Syphilis Study.
Moreover, the researchers must be able to ensure particular protection to those participants who are known to have lower independence and self-government (something that the PHS personnel took advantage of). Researchers are also required to comply with the principle of beneficence to ensure that no harm can occur to the partakers. It is their duty to take all necessary precautions and ensure the subjects’ well-being. This is in direct contradiction to what we read previously about the Tuskegee Syphilis Study: the researchers put the participants at risk via the means of invasive tests, while also exposing unsuspecting people to this infection.
According to the principle of beneficence, if the researchers found a treatment for the infection, they are liable to provide this option to the experimental group. And finally, another reason why this study cannot be conducted today is the violation of the principle of justice. There was an unfair balance between the people who suffered as a result of participating in this experiment, poor African American males, and the people who ended up benefitting as a result of this study, literally every person who contracted syphilis (Morling, 2018).
All of this leads to the conclusion that the benefits of this study are substantially outweighed by the negative implications and costs associated with it, thus making the Tuskegee Syphilis Study more prejudicial than probative.
References
Alsan, M., Wanamaker, M., & Hardeman, R. R. (2020). The Tuskegee Study of Untreated
Syphilis: A Case Study in Peripheral Trauma with Implications for Health Professionals. Journal of General Internal Medicine, 35(1), 322–325. doi: 10.1007/s11606-019-05309-8
Centers for Disease Control and Prevention [CDC]. (2015). The Tuskegee Timeline. Retrieved
from https://www.cdc.gov/tuskegee/timeline.htm.
Fourtner, A. W., Fourtner, C. R., & Herreid, C. F. (2000). Bad Blood: A Case Study of the
Tuskegee Syphilis Project. National Center for Case Study Teaching in Science. New York.
Morling, B. (2018). Ethical Guidelines for Psychology Research. Research methods in
psychology: evaluating a world of information, 89-97. New York: W.W. Norton & Company, Inc.
Paul, C. & Brookes, B. (2015). The Rationalization of Unethical Research: Revisionist Accounts
of the Tuskegee Syphilis Study and the New Zealand “Unfortunate Experiment”. American Journal of Public Health, 105(10). Retrieved from http://web.b.ebscohost.com /ehost /pdfviewer/ pdfviewer?vid=1&sid=c6098734-378d-4fc1-936c-5ca6508ca170% 40sessionmgr102.
Shavers, V. L., Lynch, C. F., & Burmeister, L. F. (2000). Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. Journal of the National Medical Association, 92(12), 562-572. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2568333/.
Tuskegee University. (2020). About the USPHS Syphilis Study. Retrieved from
kudos to your efforts in bringing out the truth. Hoe this is an eye-opener for many during the current scenario too. Keep up the good work !!!!