The costs of the tuskegee experiment on vaccine engagement

tuskegee experiment

The past is never dead. It’s not even past.

What relevance does this famous line from William Faulkner have to the development and rollout of the COVID-19 vaccine? For the Black community, it’s everything.

Failure to grapple with history has concrete consequences. For nearly a century, African Americans were mistreated and misled by the medical and healthcare industry. A prime example is the Tuskegee Experiment, an unethical, 40-year medical study that used African American men as unwitting test subjects to measure the effect of syphilis on the human body.

Today, the obvious fallout from this history is hesitancy and mistrust around the COVID-19 vaccine in the Black community. Our research shows that acknowledging and grappling with this painful past is the key to reaching African Americans.

The Background

For those unaware, the Tuskegee Experiment, or the Tuskegee Study of Untreated Syphilis in the Negro Male, was a medical study conducted by the US Public Health Service at the Tuskegee Institute in Alabama. In 1932, 600 Black men were recruited for the study and told they were being treated for “bad blood,” a non-specific term used to describe many different ailments. Since most of the men were poor sharecroppers, they willingly took part after being promised free healthcare, meals, and burial insurance.

In reality, the intention was never to provide treatment for the participants. The men were not informed that 399 of them had syphilis and that the experiment’s goal was to determine the impact of the untreated disease on the human body. The other 201 men served as the control group.

The study was only supposed to last for six months, but the Public Health Service decided to continue until the men died to measure syphilis’ full effect. Even when a treatment for syphilis was developed in 1947, the men were not treated or informed that they were infected. After widespread condemnation in the 1960s and 1970s, the study was finally shut down in 1972.

We’re now dealing with the legacy of Tuskegee, along with a long history of unequal healthcare for white and Black patients. According to a Kaiser Foundation study, 35 percent of Black adults said

they would not get the COVID-19 vaccine. The memory of Tuskegee is present in some of their minds. As one respondent to an FDA-sponsored study on COVID-19 vaccine confidence stated, “I firmly believe that this is another Tuskegee experiment.”

Our Findings

The fear of being used as experiments haunts the Black community today. In a study Zebra Strategies conducted about COVID-19 safety guidelines, Black participants stated this explicitly. They resented public figures like Bill Gates stating that African Americans should get the vaccine first. This might have been a well-intentioned sentiment, but our participants said it made them feel like guinea pigs. Most said that on the contrary, they wanted other people to get the vaccine first to see the effects before deciding if they would get it for themselves.

Even when Black participants said they would get the vaccine, they voiced a deep fear that they would receive lower-quality care than white Americans. One participant said he would get the vaccine at a hospital in a “nice white neighborhood” to make sure he’d receive good care.

Exploring the problem leads to the obvious question: What do we do?

This is the primary question facing health experts troubled by African Americans’ distrust of the COVID-19 vaccine. Unfortunately, they don’t seem to know the answer. Announcements from the CDC, Dr. Fauci, and other industry experts that the vaccine is safe are good steps, but they miss the point: These experts represent the very institutions that African Americans have been harmed by. The Black community is already wary of what they hear from these sources, so reassurances fall short.

This confidence gap is the main hurdle to overcome in protecting African Americans from COVID-19.

Our Perspective

At Zebra Strategies, we prioritize respect, dignity, and cultural humility in our work. Those pillars must form the foundation of any approach that hopes to overcome the Black community’s fear and distrust of the COVID-19 vaccine.

Respect and dignity mean that POC who are hesitant about vaccines should not be shamed or ridiculed. We need to start from a baseline of understanding that their hesitations are legitimate. Given the painful history of Tuskegee and other mistreatment from the healthcare industry, Black Americans’ concerns are rooted in experience. This is a long history that won’t be forgotten overnight.

Cultural humility means that we try to understand each person’s cultural background without judging it. The University of Texas’ Hogg Foundation for Mental Health writes that cultural humility requires historical awareness, and specifically cites Tuskegee as an example. This means that we can’t bury painful historical events or pretend they didn’t happen. This isn’t helpful, and it will make people or organizations that ignore history look detached.

While building connections will be a challenge, there is also plenty of good news to report. Our own studies showed that African American participants were very compliant with all other safety guidelines for controlling COVID-19, citing concerns for their families’ health as the primary motivation. Some participants noted that they couldn’t risk getting sick because they had to work to take care of their children. Vaccine messaging that focuses on family and community health can tap into that motivation and demonstrate how the vaccine can contribute to that goal.

Black Americans are not at all ignorant of COVID-19 or unmotivated to do their part to stop the spread. Rather, they are working from an existing distrust of the healthcare industry. Acknowledging that history is a key part of building trust back up.

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