A century-old study is still affecting doctor-patient trust today.
The health disparities in the United States stem from a number of factors. Systemic obstacles to health care can make good care less accessible to vulnerable populations, lack of insurance coverage can make it unaffordable, and a mistrust in the healthcare system can make Black Americans hesitant to visit their doctors at all.
The mistrust in the healthcare system—and even in individual physicians—has a complex history. White physicians may carry implicit cultural biases that make Black patients feel misunderstood, unheard, or neglected. To make it worse, only 5 percent of active physicians in the U.S. are Black or African American, according to the Association of American Medical Colleges.
But it’s not simply present-day treatment of Black Americans that shapes the doctor-patient relationship. “There’s one very big blemish in our nation’s history when it comes to our research on Black patients,” says Sanjai Sinha, MD, internist at Weill Cornell Medicine. “Between 1930 and 1970, there was a famous study called the Tuskegee Syphilis Study.”
The Tuskegee Syphilis Study
Today’s medical studies demand following specific standards to keep human subjects safe. For example, if you are testing a new medication, your human subjects must give informed consent (meaning you have told them the purpose and extent of the study), and the study must be ethical. Before testing can begin, the study must get approval by Institutional Review Boards (IRB).
But this process didn't go into effect until the 1970s. It was a direct response to a study called the “Tuskegee Study of Untreated Syphilis in the Negro Male.”
The study began on the wrong foot right away when researchers told the Black men (who were low-income sharecroppers in Alabama) that they were being "treated" for “bad blood." In reality, the researchers were not providing any treatment at all. The researchers also told the men that the study would last just six months, but it stretched for 40 years.
When news broke of the study in 1972, it obviously appalled the public. Further investigation revealed that the men had consented to the study, but the researchers had severely misled them about the purpose of the study. In other words, the participants did not provide informed consent.
Thanks to the investigation, study stopped immediately, a class-action lawsuit was filed, and a benefit program began to provide reparations for any living participants, as well as their wives and offspring.
The Lasting Effects of the Study
While you certainly can't blame all of today's health disparities on this one study, it became a symbol of a system that was neglecting and objectifying Black lives.
“Because of this very unethical research on Black men, it’s not very much of a stretch to understand why the Black community … has a grave mistrust of the healthcare system. That kind of history doesn’t die quickly,” says Dr. Sinha.
Today, physicians like Dr. Sinha are working to understand how to improve doctor-patient relationships for Black patients, cultural competency among physicians, and accessibility to healthcare facilities.
The goal? Reduce the factors, biases, and obstacles that lead to higher rates of certain diseases among Black Americans. Learn more about what healthcare facilities are doing today to connect vulnerable populations.
Dr. Sinha specializes in internal medicine at Weill Cornell Medicine in New York.
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What are some of the historical factors that have engendered
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this lack of trust between physicians and patients?
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Yeah, there's one very big blemish in our nation's history
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when it comes to our research on Black patients.
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Earlier in this century, and this has built a lot of the mistrust that now exists today.
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Earlier in the 1900s between 1930 and 1970,
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there was a famous study called the Tuskegee Syphilis Study,
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and it was commissioned by the U.S. Public Health Service
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in collaboration with Tuskegee University in Alabama,
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and the objective of the study was to follow men with syphilis
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and to understand the natural history of what syphilis can do to you
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without offering any treatment.
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This was completely unethical because treatment became available in the 1940s.
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Because what kind of men were these?
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These were poor, Black men in Alabama.
They were sharecroppers.
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They recruited about 600 of these men,
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and told them the study was gonna last 6 months.
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It lasted 40 years,
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and they followed these patients to see what would happen
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to them with untreated syphilis.
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All kinds of skin problems, then they would have cardiac problems
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and neurologic problems and eventually death.
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Yet, by the '40s, they had penicillin,
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which was still to this day the number one treatment for syphilis,
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but they didn't offer it to them because they wanted
to learn about the natural history.
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It was an awful, awful moment in our history.
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It didn't even become public until 1972,
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and when it became public, it shut down.
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Because of this very unethical research on Black men,
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it's not very much of a stretch to understand why the Black community,
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Black men in particular, but the Black community,
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has a grave mistrust of the healthcare system.
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That kind of history doesn't die quickly.
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Because of that horrible, horrible event, seven years later,
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the United States took action in protecting human subjects
in all kinds of research,
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and to this day, they have continued to regulate very heavily
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any trial in America that involves studying human beings,
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even if it's not directly involving a human subject taking medicine, if you will,
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if it's just looking at their charts to understand
their medical problems and treatments,
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all of that has to go through an Institutional Review Board,
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at every academic medical center and drug company in the country
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because of this lack of consent that patients didn't have in the Tuskegee trial
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and the inability for the right thing to be done for so many years.
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These days, if you're tested, the effect of the medicine,
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if it shows to be very effective, significantly shown in a study,
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anywhere in the world, they stop the study right then and say,
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'We can't any longer not give this medicine to the people
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in the study who are receiving a treatment that is a placebo
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because that's unethical. We now know that this is effective.'
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That wasn't done in Tuskegee, and that I think created
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an enormous amount of mistrust, and as we said earlier,
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when you have mistrust, why should you listen to us?
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Why should you come to me?
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And so one of the things that we're also trying to do is say,
well, who do you trust?
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And how do we connect with the people that you trust?
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And how do we better convey information now in 2019 today,
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where we are just trying to give you the best information
that we have available,
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it doesn't matter what your ethnicity is,
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but we want you to trust that we're not trying to experiment on you.
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And that we offer this treatment to everyone.
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- Diversity in medicine: facts and figures 2019. Washington, DC: Association of American Medical Colleges. (Accessed on June 15, 2020)
- Regulations: good clinical practice and clinical trials. Washington, DC: U.S. Food and Drug Administration, 2019. (Accessed on June 15, 2020)
- The Tuskegee timeline. Atlanta, GA: Centers for Disease Control and Prevention, 2020. (Accessed on June 15, 2020)