A 40-year study on syphilis was officially concluded 50 years ago this month.
On Nov. 16, 1972, Assistant Secretary for Health Merlin K. Duval instructed the Director of the Center for Disease Control to terminate the “Tuskegee Study.”
The study began in the post-World War I era when the U.S. Public Health Service became actively engaged in studying and combating venereal diseases.
In 1929, the Oslo Study of Untreated Syphilis became widely available. It was a retrospective study of 473 Norwegian syphilis patients who were post-infection. Oslo was significant as it suggested the possibility of a spontaneous cure.
In the U.S., Western Reserve University, Mayo Clinic, John Hopkins University and the University of Michigan were all conducting treatment and control studies from 1930-1932.
The primary treatment for latent syphilis was multiple rounds of arsenicals and bismuth. Though risky, 85% of treated patients experienced successful clinical outcomes, compared to 35% of untreated patients.
Researchers wanted to understand how these untreated patients went into remission. In addition, since most of the studies had been dominated by white participants, it was thought that an observational study of African Americans would be helpful.
Therefore, the USPHS used data from its 1929 syphilis control studies conducted in six southern states and selected Macon County, Alabama, as a location for the study. At the time, Macon County was 82.4% African American, with many county residents living below the poverty line.
Tuskegee Institute (now Tuskegee University), a historically Black college, was nearby, and the county had an abnormally high rate of syphilis (35%) among male residents. This made it easy to recruit 399 infected men for a multi-year observational study.
Much has been written over the years about the study’s lack of informed consent. Archive documentation is lacking, and survivor interviews from the 1970s are conflicting. Nevertheless, it is clear that participants were not adequately informed about the nature of their condition or the available treatment options.
Reports indicate that participants were frequently told that they suffered from “Bad Blood” and were discouraged from seeking medical assistance outside of the study. While it would be unfair to apply today’s standard of informed consent to the study, these men were not given the whole truth, and most were blatantly manipulated in order to enroll them in the study.
An obviously immoral turn happened in 1936 when researchers changed the planned short-term observational study into a long-term study by following participants until they died.
The knowledge and use of heavy metals to treat syphilis, especially among younger patients, was prevalent by this time. Yet, no attempt to educate participants about their options or provide treatment for younger participants appears to have been made.
The immorality of the research process increased in 1943 when penicillin was first used to successfully treat syphilis. By 1953, the use of penicillin was widespread and even used to treat pregnant women.
Yet, there is no evidence that researchers provided information about the therapeutic value of penicillin or provided the treatment to study participants.
Available historical records are unclear. There is some evidence that prior to penicillin a few participants received differing degrees of arsenical treatment. Interviews conducted in the 1970s with participants are inconsistent.
Researchers did intervene in 1941 and 1942, requesting the local draft board exempt 256 men from receiving the required anti-syphilitic treatment as they were participating in the study.
Some participants were aware of possible treatment options as they were instructed by the Selective Service Board to begin anti-syphilitic treatments prior to the waver. In addition, study archives suggest that many of the participants had received some level of treatment with heavy metals by physicians who were not part of the study.
Regardless, the failure to treat participants with penicillin once it was shown to be affective, to have fewer side effects and to be widely available was immoral.
Things began to change in 1968 when Peter Buxtun, a venereal disease investigator unrelated to the Tuskegee study, learned about the research and voiced concerns to USPHS.
The following year, the Center for Disease Control met with local chapters of the American Medical Association and the Negro Medical Association to evaluate the merits of the study. Both groups reaffirmed the research as valuable.
In 1972, Buxtun leaked study reports to Associated Press journalist Jean Heller who ultimately published an article in The Washington Star. Heller’s article generated public outcry nationwide, resulting in the formation of an advisory panel that called the study “ethically unjustified” due to its lack of obtaining informed consent from patients and recommended the program to be terminated.
Myths about what happened in Macon County abound.
Reports of the U.S. Army infecting subjects or a grand government conspiracy have no supporting documentation. What is documented is that these men were clearly manipulated, lied to and treated like objects, and for 40 years no one stood up for them.
The apology President Bill Clinton offered on behalf of the country in 1997 will never be enough.
The study never should have been conducted after 1936, and probably never should have been conducted at all. The true horror is that it should not have taken 40 years for the public to insist that the project be shut down.
Countless times the study was reported in prestigious academic journals like the Journal of the American Medical Association (1936), the Archive of Internal Medicine (1964), Journal of Venereal Disease (1936, 1946), the American Journal of Syphilis (1950, 1953), the Journal of Chronic Disease (1955, 1956) and Public Health Reports (1954).
It wasn’t a lack of awareness that delayed the termination of the study. What was happening to these men was known. It was a moral failure of apathy by the people who are called to protect us.
It is a story that we must never forget, and we should never again allow human beings to be treated like research objects.
Editor’s note: This article is a first in a series this week, calling attention to the anniversary of the Tuskegee study being terminated.
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