Last week, Rochelle Walensky, director of the Centers for Disease Control, tweeted.
This year marks the 50th anniversary of the end of the Tuskegee syphilis study. Tomorrow, I will be joined by colleagues & #PublicHealth leaders as we honor the 623 African American men, their suffering & sacrifice, and our commitment to ethical research and practice.
But, as one person, LawyerLady, pointed out on Twitter, they didn’t sacrifice; rather they were sacrificed. In other words they had no agency, no choice.
Recall what the Tuskegee experiment was. Actually, and at least a little ironically, the CDC itself does a nice job of laying out the horrific experiment. The CDC writes:
In 1932, the USPHS [United States Public Health Service], working with the Tuskegee Institute, began a study to record the natural history of syphilis. It was originally called the “Tuskegee Study of Untreated Syphilis in the Negro Male” (now referred to as the “USPHS Syphilis Study at Tuskegee”). The study initially involved 600 Black men – 399 with syphilis, 201 who did not have the disease. Participants’ informed consent was not collected. Researchers told the men they were being treated for “bad blood,” a local term used to describe several ailments, including syphilis, anemia, and fatigue. In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance.
The CDC continues:
By 1943, penicillin was the treatment of choice for syphilis and becoming widely available, but the participants in the study were not offered treatment. (bold added.)
In 1972, an Associated Press story about the study was published. As a result, the Assistant Secretary for Health and Scientific Affairs appointed an Ad Hoc Advisory Panel to review the study. The advisory panel concluded that the study was “ethically unjustified”; that is, the “results [were] disproportionately meager compared with known risks to human subjects involved.”
Good for them for concluding that it was ethically unjustified. Their reasoning about why, though, was seriously deficient. You need only read the above quotes to see 2 reasons why. First, the participants were told they were being treated for “bad blood,” which includes, but is not the same as, what they were being treated for: syphilis. Second, in 1943, once penicillin had become the treatment of choice. they were not offered it.
It might well be that the “results [were] disproportionately meager compared with known risks to human subjects involved.” But that wasn’t the key problem. The key problem is that the U.S. Public Health Service lied to the subjects and then withheld effective treatment.
The pic above is of ethically deficient Walensky.