This month, we’re starting a new series delving into snapshots of science history and their lasting impact on the modern world. In honor of Juneteenth, we’ll start with the Tuskegee Syphilis Study—a clinical study that contributed greatly to the erosion of trust between the healthcare industry and the Black community. This broken trust has had a lasting negative effect on the health of Black people and on the diversity of clinical trials. Diverse clinical trials are crucial to ensuring that new treatments are effective and safe for all the populations they are used in. During the COVID-19 pandemic, Black people made up just 3% of vaccine trial participants—even though they accounted for 21% of COVID-related deaths. An NAACP survey in November 2020 found that only 14% of Black Americans surveyed said they trusted the vaccine’s safety, and only 18% said they would get vaccinated. While public mistrust of the COVID vaccines is certainly rife across the US, this racial disparity is only the tip of a deeply entrenched system of health inequality built on mistreatment, mistrust, and misinformation.
In 1932, the US Public Health Service developed the Tuskegee Syphilis Study in collaboration with the Tuskegee Institute in Macon, Alabama in order to study the natural development of untreated syphilis. The study recruited 600 Black men from the local area, 399 who had syphilis and 201 who did not. Importantly, none of these men were told they were participating in an experiment. Instead, they were told that the government was providing them with free treatment for “bad blood.” Today, informed consent is an ethical standard required in all clinical research, but at the time, there were very few formal protections for human subjects.
When the Tuskegee Syphilis Study started, the common syphilis treatment options were dangerous and not very effective, but in 1943 penicillin was introduced as a highly effective syphilis treatment with relatively few negative side effects. By 1947, penicillin was widely regarded as a cure for syphilis, but the researchers continued to deny study participants treatment. For 40 years, study participants did not receive treatment for their syphilis and were never informed that they had syphilis. As a result, participants suffered ongoing symptoms—with many of the men dying due to complications of the infection—and unknowingly spread the disease to members of their families.
In 1972, a reporter for the Associated Press published an article exposing the unethical conduct of the Tuskegee Syphilis Study, resulting in a public outcry. The study was officially closed in October 1972 following an Advisory Panel review, and a class-action lawsuit won the victims a multi-million dollar settlement. Additionally, a health benefits program was set up to give victims and their families access to medical care and burial services. In 1974, Congress passed the National Research Act for the ethical protection of human subjects.
In the decades following the close of the Tuskegee Syphilis Study, several national and international regulations and guidances have been put in place to protect human subjects in clinical trials. These protections ensure that a study like the Tuskegee Syphilis Study cannot happen again. Even still, the fallout from this study continues to impact the Black community. It’s also important to note that this historical event is only one factor contributing to the ongoing systemic racism in medicine.
To learn more about the Tuskegee Syphilis Study, check out the following video from CrashCourse:
If you enjoyed this month’s post, check out the Black History Month tag for more great science stories! Comment or email us at contact@anyonecanscience.com to let us know what you think of this week’s post. And subscribe below for weekly science emails!
