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African Americans are the worst-hit ethnic group in the US coronavirus crisis. A decades-old mistrust in government health services called the 'Tuskegee Effect' could be fuelling the problem.

Apr 7, 2020, 17:08 IST
  • African American communities are suffering disproportionately during the coronavirus outbreak.
  • Recent data shows that black people make up 39% of deaths in Chicago, 40% in Michigan, 42% in Illinois, and 81% in Milwaukee.
  • Black communities are on average poorer and in worse health than other ethnic groups, leaving them vulnerable to the virus, according to experts.
  • Studies have found that black people are less likely to seek medical help for ailments, due to a mistrust of the US health system, which has been historically racist.
  • The Tuskegee experiment is the standout example. From 1932 to 1972, scientists experimented on 400 black men with syphilis without telling them. They did not allow them to have the cure when it was discovered in 1947 and continued to study them in many cases until they died.
  • Visit Business Insider's homepage for more stories.

African American populations in the US are some of the worst hit by the coronavirus crisis.

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According to the latest figures they they make up 39% (1,824) of deaths in Chicago, 40% (298) in Michigan, 42% (129) in Illinois, and 81% (22) in Milwaukee.

The most frequently cited reason for this is that black, urban communities are some of the poorest and most disadvantaged in the US.

Many live with no access to medical care and above-average levels of debilitating illness and disease, rendering them more at risk of the coronavirus than other ethnic groups.

But African Americans may be suffering more than any other ethnic group because they are reluctant to go to hospital in the first place due to a historic mistrust of the institutions, according to experts, even if they show symptoms of the coronavirus.

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It's known as the "Tuskegee Effect," named after the Tuskegee Study of Untreated Syphilis in the Negro Male.

From 1932 to 1972 the US Public Health Service studied 399 black men with syphilis, plus 201 more without it who were used as a control group.

Scientists wanted to know whether the disease affected black men differently to white men.

The men weren't told they had syphilis - instead they were made to believe they were being studied for "bad blood." The men were treated without their consent. The men were placated with free meals, rides to the clinic, and burial insurance.

In 1947, penicillin was discovered as a cure for syphilis but the PHS didn't give it to any of the men. Instead it continued to study them, many until their deaths, until The Associated Press exposed the scandal in 1972.

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In 1974, the victims shared $10 million awarded in legal damages. The last living member of the study died on January 16, 2004.

The Tuskegee scandal is one of a number of medical experiments conducted solely on African Americans in the US, the legacy of which manifests in a distrust of US medical and healthcare provision.

Some professionals argue the legacy of the event is the most important factor in explaining why African Americans are more likely to eschew the US healthcare system than other ethnic groups.

"The Tuskegee Syphilis Study is frequently described as the singular reason behind African-American distrust of the institutions of medicine and public health," Dr Vanessa Northington Gamble wrote in the American Journal of Public Health in November 1997.

A June 2006 scientific paper that studied perceptions of healthcare in several black communities in Chicago found a "disconcerting" trend where those studied "said that they expected to be experimented on in the course of routine medical care."

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"Many participants perceived events that others would see as routine or incompetent medical care as experimentation and attributed this expectation to their knowledge of the Tuskegee Syphilis Study," the paper said.

Dr. Jasmine Marcelin, a doctor at the University of Nebraska Medical Center, told Business Insider that the study bred a distrust of the healthcare system, and that in turn contributed to racial inequality.

"The Tuskegee study demonstrated how conscious bias, in this case manifested in the form of racism, led to the unethical treatment of black men that continues to have long-lasting effects on health equity and justice in today's society," Marcelin said.

Another, more recent medical zeitgeist that experts say has contributed to an African American mistrust of US healthcare services is the 1970 sickle cell testing debate.

Between 1971 and 1972, 12 US states passed laws saying that sickle cell testing should be conducted mainly on African Americans.

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Lawmakers argued this was because black people experienced more sickle cell disease than other ethnic groups, but many black communities said the laws were racist, and said they were being used as guinea pigs.

Similarly, the case of Henrietta Lacks is widely-touted example of how black people have been mistreated by the US medical community.

In 1951, and without her consent, doctors at Johns Hopkins Hospital secretly took cervical cancer cells from Lacks, then 31, who had admitted herself to hospital. They subsequently used them in research which has led to substantial advances in the field. She was never given any compensation and died in 1951.

"I've just been conditioned not to trust," Rahmell Peebles, a gym-worker in New York City who is black, told The Associated Press this week.

"If we got to a place where the government says, 'OK, now it's time to take a vaccine,' then I'm definitely going to be skeptical of their intentions."

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Congresswoman Ayanna Pressley and four other representatives are lobbying the Trump administration to include data based on ethnicity in coronavirus reporting.

"Although COVID-19 does not discriminate along racial or ethnic lines, existing racial disparities and inequities in health outcomes and health care access may mean that the nation's response to preventing and mitigating its harms will not be felt equally in every community," a March 27 letter to US health secretary Alex Azar said.

Pressley later told the AP: "We are right to be paranoid and to ask tough questions. History has shown us, when we do not ... the consequences are grave, and in fact life and death."

"A pandemic just magnifies the disparities in healthcare that many communities of color face," Dr. Summer Johnson McGee, dean of the School of Health Sciences at the University of New Haven, told Reuters.

Do you have a personal experience with the coronavirus you'd like to share? Or a tip on how your town or community is handling the pandemic? Please email covidtips@businessinsider.com and tell us your story.

And get the latest coronavirus analysis and research from Business Insider Intelligence on how COVID-19 is impacting businesses.

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