Credit: U.S. National Archives
Credit: U.S. National Archives
The year 2022 marks the 5oth anniversary of a major news event--journalist Jean Heller's story about the Tuskegee syphilis study. In Chapter 4 you can read about the study, in which poor Black men in Alabama were recruited and purposefully not treated for syphilis. The news story first appeared in the Associated Press (the AP). To honor its 50-year anniversary, the AP re-ran their original news report from July, 1972.
Here is the lede (the opening passage) from Heller's original story:
For 40 years the U.S. Public Health Service has conducted a study in which human guinea pigs, denied proper medical treatment, have died of syphilis and its side effects.
The study was conducted to determine from autopsies what the disease does to the human body.
PHS officials responsible for initiating the experiment have long since retired. Current PHS officials, who say they have serious doubts about the morality of the study, also say that it is too late to treat syphilis in any of the study’s surviving participants.
In Chapter 4 (Ethics), you can read how the Tuskegee syphilis study led to the Belmont Report, which outlined major changes in how research is evaluated and conducted in the United States. The Tuskegee study violated three distinct ethical principles: Respect for Persons, Beneficence, and Justice.
a) In your own words, define each of these principles.
b) Read each of the quoted passages below, from Heller's original story. Decide what ethical problems each one seems to illustrate. Can you map each passage to one of the core ethical principles of the Belmont report (Respect for Persons, Beneficence, or Justice)?
b1) The experiment, called the Tuskegee Study began in 1932 with about 600 black men mostly poor and uneducated, from Tuskegee, Ala., an area that had the highest syphilis rate in the nation at the time.
b2) As incentives to enter the program, the men were promised free transportation to and from hospitals, free hot lunches, free medicine for any disease other than syphilis and free burial after autopsies were performed.
b3) The Tuskegee Study began 10 years before penicillin was discovered to be a cure for syphilis and 15 years before the drug became widely available. Yet, even after penicillin became common, and while its use probably could have helped or saved a number of the experiment subjects, the drug was denied them, Dr. J.D. Millar says.
Don Prince, another official in the venereal disease branch of CDC, said [...] “I don’t know why the decision was made in 1946 not to stop the program,” Prince said. “I was unpleasantly surprised when I first came here and found out about it. It really puzzles me.”
As part of the anniversary, the AP also ran a story-behind-the-story about how Heller researched and broke the story. Here is Heller reflecting on how she felt as she was breaking the story:
Normally, reporters celebrate these “Eureka” moments. But Heller felt no such elation.
“I knew that people had died, and I was about to tell the world who they were and what they had,” she says, her voice dropping. “And finding any joy in that ... would have been unseemly.”
Heller also said,
“As much injustice as there was for Black Americans back in 1932, when the study began, I could not BELIEVE that an agency of the federal government, as much of a mistake as it was initially, could let this continue for 40 years,” says Heller. “It just made me furious.”
What were some outcomes of Heller's reporting?
Nearly four months after the story ran, the study was halted.
The government established the Tuskegee Health Benefit Program to begin treating the men, eventually expanding it to the participants’ wives, widows and children. A class-action lawsuit filed in 1973 resulted in a $10 million settlement.
c) As you reflect on this story, what are you most concerned about? What questions do you still have?
