First of two parts.
Four decades after the Tuskegee experiments ended, during a workshop on health literacy and informed consent, Dr. Alicia Fernandez of UC San Francisco said something remarkable and even chilling.
“That story,” she said of the infamous research, “most of my (medical) residents don’t know it.
“I guess they didn’t read the paper that day,” she added in disbelief. “But my patients know it.”
At Tuskegee, the subjects knew neither the title of the research (“Tuskegee Study of Untreated Syphilis in the Negro Male”) nor that they’d even been diagnosed with syphilis. When penicillin was found effective for syphilis, they continued to be studied but not treated with it. They suffered, infected others, and many died. This went on for 40 years, with government support.
The research began at the time Nazi doctors were engaged in the infamous work that resulted in the Nuremberg Code. But Tuskegee is in America, and the research continued long past the Nuremberg verdicts. (Good sources for learning about Tuskegee are here and here.)
Though the men apparently participated willingly, they were lied to about what they were participants in. And so it was fitting that the workshop at the Institute of Medicine in Washington, D.C., coincided with the anniversary of Tuskegee’s end, on July 29, 1972. Tuskegee holds valuable lessons in health literacy, informed consent and the importance of understanding how they relate.
There is no overstating Tuskegee’s legacy of distrust in medicine. Of the major principles of medical ethics — respect for persons, or autonomy; do no harm; do good; and justice — Tuskegee betrayed all four.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.