The Tuskegee Syphilis study was conducted from 1932 to 1972. There were 399 participants who had syphilis, and 200 in a control group who were not infected. The participants were primarily poor, illiterate African-American sharecroppers who were not told of their true diagnosis; rather, they were invited to join the study and given free treatment as well as a ride to the clinic. This was the first problem with the study; the participants were not aware of their condition and therefore were not able to give informed consent. They consented to being treated for “bad blood” and were blinded by the benefits being offered. In addition, the participants were frequently offered other incentives, such as a “treatment” that required a spinal tap. The tap was not therapeutic; rather, it was merely a tool to document the progression of the disease.
Originally, the purpose of the research was to study syphilis in a poor area and to document the progression of the disease. They also wished to find out if blacks suffered from syphilis differently than whites. Treatments in 1932 were often barbaric and ineffective. Because the disease tended to concentrate in the poorer, ethnic areas, this was where the study was focused. During this time, doctors routinely withheld a patient’s true diagnosis; they simply treated the patient. The problem with not telling the patient about having syphilis is that they went on to infect their wives, and subsequently, their own children. The benefit of the study to patients and medical professionals is still in question:
It took almost forty years before someone involved in the study took a hard and honest look at the end results, reporting 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.” (Brunner, 2006)
The role of ethics committees is to ensure that studies such as Tuskegee are conducted following ethical considerations, in order to protect the patient from dangerous treatments that will provide a cure as well as legal protection for the hospital and the physicians. (Annas, 1991) Had an ethics committee been involved in that study, the outcome would have been entirely different. First of all, the researchers would have had to present a full and complete description of what the study would entail. At this point, the ethics committee would have discovered that they intended to withhold the diagnosis from the patients, prevent the infected patients from seeking treatment, and that the study revolved entirely around one ethnic group and such a focus could be viewed as racist. In addition, the study ensured that all infected participants would eventually die of the disease; this is how they intended to study the results. According to Susan Smith in “Neither Victim Nor Villain”, “The study, which historian James Jones has described as “the longest nontherapeutic experiment on human beings in medical history,” was predicated on following the course of untreated syphilis until death.” (Smith, 1996). An ethics committee would first have to determine the benefit to the patient, and to future patients. They would have concluded that there was no benefit whatsoever. Next, they would discuss is potential harm could come to the patients or the public. In both cases, it would have been clear that conducting this experiment put both the patient and the public in harm’s way. This was done first of all by preventing the patients from getting treatment; penicillin was discovered twenty years before the end of the experiment, so many patients could still have been cured. While monitoring the experiment, the ethics committee would have discovered quickly that no one was being helped and that they were being harmed by not receiving information on the disease. Under those circumstances, the Tuskegee study never would have been approved.
Management’s responsibility would depend entirely on one’s point of view. First, one could say that management had a responsibility to maintain the study for as long as possible. It would have been management’s responsibility to prevent the participants from gaining treatment anywhere else. Some participants were drafted for World War II. At that time, the experiment was in trouble: 250 men were drafted, diagnosed with syphilis during the physical, and were expected to be treated before they could be sent to war. Management at the U.S. Public Health Service handled that situation in order to maintain the experiment: those 250 infected participants were excused from going to war and were never treated for the disease (Brunner, 2006). Next, the introduction of penicillin would have put those in power in a much more difficult position. However, it also provided them with an opportunity to answer an entirely different question, that of whether or not penicillin is a cure for syphilis, and to find the stage of the disease where it is no longer a cure. While this was not the original intention of the study, it would have made a reasonable alternative. Regardless of management’s responsibility to the study, the manager’s own value system should have prevented the continuation of the study once penicillin became an alternative to dying.
If I had been in a position of power, I would have taken an entirely different approach to the study. First of all, one of the purposes was to compare the progression of the disease in blacks and whites; however, there was no parallel study being conducted on whites during this time. I would have divided up the original study into two groups: the first group would contain the patients who were in the early stages of the disease and who could still potentially be cured; the second group would contain the patients who were in the latter stages of the disease and who had no chance for a meaningful recovery.
The goal of the experiment on the first group would have been to both document the progression of the disease and to experiment with potential treatments and cures. The patients would have been told up front of their diagnosis, prognosis, and chances for a cure. This was a poor area where most of the patients had never seen a doctor; they could have handled the truth in order to give consent. The second group would have been told of their diagnosis, the grim prognosis, and the fact that they would be observed, but not cured. Had they also been paid, I believe that the men would have agreed to participate.
During World War II, I would have ordered that the infected, curable men who were supposed to fight be released and treated. I would still have the incurable group whose progression could still be tracked. Losing so many participants (originally, it would have been 250 out of 299) would have destroyed the experiment, but it would have been more important to get those men treatment so they could go on to live healthy lives and not spread the disease further.
In conclusion, the Tuskegee Syphilis Experiment mirrored the attitude of the times: poor black sharecroppers were disposable. Instead of a successful experiment, it wound up being the most embarrassing government-sponsored experiment to date. It reinforced the fear that African-Americans need to stay away from the government, for it cannot be trusted. The benefit of the experiment is the knowledge of the horrific events that can take place when research is conducted without ethics.
Works Cited:
- Annas, G. J. (1991). Ethics Committees: From Ethical Comfort to Ethical Cover. The Hastings Center Report, 21(3), 18+.
- Brunner, B (2006). Tuskegee Syphilis Experiment. Retrieved January 18, 2007, from InfoPlease Web site: http://www.infoplease.com/spot/bhmtuskegee1.html
- Smith, S. L. (1996). Neither Victim nor Villain: Nurse Eunice Rivers,The Tuskegee Syphilis Experiment, and Public Health Work. Journal of Women’s History, 8(1), 95-113.
