Tomorrow marks the first day of National Health Ethics Week and as a reminder of why ethics matter in health studies, I want to place a spotlight on the Tuskegee Syphilis Study. I was first introduced to the events that took place during this study in my undergraduate ethics course. Not only was I left wondering how something like this could happen, I had to consider how easy it is to let such a situation progressively worsen before taking the steps needed to correct ethical wrongdoings. Overall, this study presents an interesting case on ethics, showing us how far it is possible to go without taking the rights of study participants into consideration.
Originally projected to last 6 months, the Tuskegee Syphilis Study took place over the span of 40 years, from 1932-1972, in Tuskegee, Alabama. It involved the participation of 600 impoverished black men with (399) and without (201) syphilis. The purpose of this study was to record and understand the natural history of syphilis in black men, with the hope of starting a treatment program. Yet despite these noble intentions, the study caused a tremendous amount of grievances for not only the participants, but their families as well.
Almost immediately the study was moving down a path of harm by recruiting participants without obtaining their informed consent. Rather than sharing the details of the study, researchers told participants that they would be treated for “bad blood”, which according to the Centres for Disease Control and Prevention (CDC), was a common term that referred a broad range of illnesses and diseases. Uninformed of the study purpose, participants were promised free treatment for a vague disorder.
Importantly, this study continued despite the creation of the Nuremburg Code in 1947, which outlines a set of research ethics principles for human experimentation – it was created in response to the atrocious experiments conducted by the Nazis during WWII. A key part of this code was the importance of obtaining informed consent. Even worse, however, was the fact that participants with syphilis were denied penicillin, an antibiotic that became widely available in the 1940s and was being used to successfully treat syphilis. Instead, the researchers continued to treat the men infected with syphilis in this study with heavy metals, a treatment that was the norm before the arrival of penicillin.
Plain and simple, these men were duped into joining a study that caused more harm than benefit. The study only came to an end after an expose was published by the Washington Star in 1972. After the death of many participants due to a failure in providing proper treatment, many of their families suffered as well because they lost their breadwinner. Fortunately, a class action lawsuit resulted in a $10 million settlement and a lifetime provision of healthcare by the US government for the surviving study participants and their families, as well as the families of those participants who passed away.
Although an apology on behalf of the United States was issued by President Bill Clinton in 1997 (25 years after the study ended), what remains is the fact that the persons who enrolled in the study were stripped of their rights and treated in a manner that failed to consider their personhood for a whole host of reasons, including race and poverty. If you’re interested in learning more about the study, a 1997 film titled Miss Evers’ Boys was made on the topic. The Deadly Deception, a documentary on the subject, is also available on YouTube. To read about the topic, I would suggest Bad Blood: The Tuskegee Syphilis Experiment by James H Jones or The Tuskegee Syphilis Study by Fred Gray.