2022 marks the 50th anniversary of the atrocities of the infamous Tuskegee Syphilis Study being brought to light in an expose by Jean Heller.
“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.”
-Jean Heller, lede of “Syphilis Victims in U.S. Study Went Untreated for 40 Years,” New York Times, July 26,
1972.
Her report revealed the ghastly work being conducted by the U.S. Public Health Service. The study recruited 600 black men in 1932 to be infected with syphilis and left untreated for 6 months. This continued for 40 years, culminating in over 100 deaths despite promises of medical care for their participation and eventually, the availability of penicillin. The morbidities and mortalities grew as the disease was spread to several spouses and children of participants. The unethical work continues to loom over African American communities and is often cited as a source of discontinued trust towards the government, medical research, and guidelines.
Though a slew of rules, guidelines, and regulatory bodies dictate how research is conducted now, fear continues to persist. In part because the public does not have extensive knowledge about the safeguards that are meant to protect them and research participants. In fact, when the story first broke out, surveys revealed that 90% of Americans did not know that the study happened, let alone that it was an ongoing project even after the advent of penicillin, and continued for another 20 years after that. Even now there are many details about the study that have been forgotten or obscured.
For one, the CDC had published 15 articles over the course of the study, detailing how horrific untreated syphilis is and in response, not a single piece was published in protest for the treatment of the Tuskegee men.
Additionally, Peter Buxton, a 27-year-old social worker in 1966 learned of the experiment in passing and contacted the CDC numerous times in protest. He was rejected 6 times before leaking information to Jean Heller.
Or that many investigators and officials from 1932-1972 had also found the experiment essential to complete and found a way to make it morally justifiable to themselves.
While it’s tempting to look back at this seminal moment in history with moral outrage, it is a good opportunity for future clinicians, scientists, and authority figures to reflect on our responsibilities. It is easy to vilify everyone involved in the Tuskegee study, especially in memoriam articles where failure to remember the lives lost continues to add injury to the dead. It’s our duty to remember them, the wrongs done to them and to do better. Regulations draw the line, and we are all susceptible to crossing it. Ultimately, the public must trust doctors, scientists, trust us – our humanity and our ethics.