Throughout February, NOAH will share and honor Black History Month with snapshots of just a few of the important, impactful, and life-saving stories of Black history and healthcare in America. One of our primary goals at NOAH is ensure quality healthcare for every member of our community. It is well-established that blacks and other minority groups in the U.S. experience more illness, worse outcomes, and premature death compared with whites. To change that, we will look at where we have been, what we have accomplished, and how we will collectively achieve these goals.
Understanding the Tuskegee Study
By Jennifer Perry, MD, PGY-3
Frequently cited as one of the original causes of mistrust and discord between the African American community and the U.S. Department of Health and its branches is the “Tuskegee Study of Untreated Syphilis in the Negro Male.” This study was intended to examine the progression of syphilis in humans. After the promise of free medical care, 600 Black men in Alabama registered for the study in 1932. The details of the study were not disclosed to the men who registered. Of the 600 participants, 399 had the disease while the remaining 201 served as the control group.
Researchers only told the men they were being treated for “bad blood,” a local term used during that time to describe several different ailments. However, the men in the study were all given a placebo (a pill or treatment with no medical effect) such as aspirin and mineral supplements. Healthcare workers continued to monitor the participants and provide ineffective treatments. Although the study was intended to be six months, it continued for 40 years. The men suffering from the disease continued to receive placebos, even after penicillin became an effective treatment for syphilis in 1947, 15 years into the study.
The men in the study paid the ultimate price of blindness, insanity, and death as their disease progressed unnecessarily for the sake of scientific analysis. Later research found nothing to show the men were given the option to leave the study once effective treatment had become available.
In the mid-1960’s, Peter Buxton, a venereal disease investigator raised concerns about the ethics of “The Tuskegee Syphilis Study” as it became known, and a committee was formed to review it. Ultimately, the committee elected to allow the experiment to continue, and recommended concluding only once all participants had died, autopsies had been performed, and the data analyzed.
Buxton decided to leak the story. He sent the information to Associated Press reporter Jean Heller, who published the findings. When the story broke in 1972, it was met with public outrage. By that time, 128 participants had died from the disease or related complications, while at least 40 spouses had been infected, and 19 children had contracted syphilis in-utero. After the conclusion of Congressional hearings, the living participants and their families collectively reached an out-of-court settlement of $9 million, and new guidelines were issued to protect future participants of human studies. As part of the settlement, the U.S. government promised participants (later extended to spouses and their offspring) lifetime medical benefits offered through the Tuskegee Health Benefit Program.
Although the government has attempted to make amends, including an apology from President Bill Clinton in 1997, suspicion of the government and healthcare services continue to plague the Black community. Even with the COVID-19 vaccine in 2021 there is still caution, distrust, and wariness as a result of events in our history like “The Tuskegee Syphilis Study” and other disparities in healthcare for Black Americans.
To learn more, watch The Tuskegee Study video by Black History in Two Minutes or read The Tuskegee Study Timeline by the CDC.
Read our other Black History Month snapshots: