Early Covid-19 Research Isn’t As Inclusive As It Should Be
Experts agree that people of color must be adequately represented in coronavirus vaccine and drug trials. It’s unclear whether that’s happening.
The Tuskegee Syphilis Study is one of the most infamous — and, ultimately, atrocious — biomedical research experiments in American history.
According to the Centers for Disease Control and Prevention, the study began in 1932 as a Depression-era effort to secure funding and justify treatment programs for Black Americans with syphilis. The U.S. Public Health Service recruited 600 Black men in Alabama, 399 of whom had the infection. The men were told they were being treated for “bad blood,” the colloquial term used at that time to describe a number of medical issues, though they never received proper care or drugs.
The study’s true aim — one never disclosed to its participants — was to document the effects of untreated syphilis. Though it was originally intended to last six months, the study went on for 40 years. By 1972, when an Associated Press exposé and a government inquiry led to the study’s termination, doctors had known for more than three decades that penicillin was an effective treatment for syphilis. The men in the study never got it, and more than 100 of them died of the infection or related complications. Many passed the infection on to their partners and children.
The ugly legacy of the Tuskegee Syphilis Study is just one reason why, almost 50 years after its termination, Black Americans and members of other marginalized or disadvantaged groups may still be leery of medical science and are often not appropriately represented in biomedical research.
Black Americans make up 12% of the population but just 5% of clinical trial participants.
“Historically, participation has been low for racial and ethnic minorities, and I think the legacy of [the] Tuskegee [Syphilis Study] is a part of that,” says Ruqaiijah Yearby, JD, MPH, a professor of law and executive director of the Saint Louis University Institute for Healing Justice and Equity. “But I think there’s also distrust from clinical trials that…