Ugly History: The U.S. Syphilis Experiment - Susan M. Reverby

619,935 views ・ 2021-06-08

TED-Ed


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In the 1930s, the United States was ravaged by syphilis.
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This sexually transmitted infection afflicted nearly 1 in 10 Americans,
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producing painful sores and rashes that persisted for roughly two years.
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After these initial symptoms, late-stage syphilis was known to cause organ damage,
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heart and brain disorders, and even blindness.
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It was incredibly difficult to slow the disease’s spread.
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Experts cautioned against unprotected sex,
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but the infection could also be passed during childbirth.
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Worse still, existing treatments like mercury and bismuth
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were considered unreliable at best and potentially harmful at worst.
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Today these heavy metals are classified as toxic,
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but at the time, doctors were still uncovering their dangerous side effects.
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Amidst the uncertainty, health care professionals had two key questions.
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Did late-stage syphilis warrant the risks of existing treatments?
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And, did the infected individual’s race change how the disease progressed?
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Many physicians were convinced syphilis affected
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the neurological systems of white patients
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and the cardiovascular systems of Black patients.
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There was little evidence for this theory,
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but the U.S. Public Health Service was determined to investigate further.
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In 1932 they launched a massive experiment in Tuskegee, Alabama.
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The town had already possessed a small hospital,
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and the area was home to a large population of potential participants.
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The PHS collaborated with local doctors and nurses
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to recruit roughly 400 Black men presumed to have noncontagious late-stage syphilis,
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as well as 200 non-syphilitic Black men for their control group.
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But their recruitment plan centered on a lie.
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While the researchers planned to observe how syphilis
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would progress with minimal treatment,
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participants were told they would receive free drugs and care for their condition.
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At first, researchers gave the men existing treatments,
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but these were soon replaced with placebos.
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Under the false pretense of providing a special remedy,
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researchers performed painful and invasive spinal taps
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to investigate the disease’s neurological consequences.
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When patients died, the PHS would swoop in to study the body
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by funding funerals in exchange for autopsies.
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In their published studies, they listed the men as volunteers
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to obscure the circumstances under which they’d been recruited.
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Outside Alabama, syphilis treatment was advancing.
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A decade after the study began,
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clinical trials confirmed that penicillin effectively cured the disease
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in its early stages.
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But in Tuskegee, researchers were determined to keep pursuing
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what they considered vital research.
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They had yet to confirm their theories about racial difference,
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and they believed they would never have another opportunity
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to observe the long-term effects of untreated syphilis.
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The study’s leadership decided to withhold knowledge of new treatments
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from their subjects.
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During World War II, researchers convinced the local draft board
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to exempt men from their study,
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preventing them from enlisting and potentially accessing penicillin.
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The study even continued through the 1950s
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when penicillin was shown to help manage late-stage syphilis.
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By today’s bioethical standards,
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withholding treatment in a research study without a patient’s informed consent
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is morally abhorrent.
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But for a large part of the 20th century, this practice was not uncommon.
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In the 1940s, US led studies in Guatemala infected
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numerous prisoners, sex workers, soldiers, and mental health patients
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with sexually transmitted infections to study potential treatments.
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And other studies throughout the 50s and 60s
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saw doctors secretly infecting patients with viral hepatitis or even cancer cells.
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Eventually, researchers began objecting to these unjust experiments.
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In the late 1960s, an STI contact tracer named Peter Buxtun
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convinced the PHS to consider ending the study.
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But after leadership decided against it, Buxtun sent his concerns to the press.
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In July of 1972, an exposé of the Tuskegee study made headlines across the country.
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Following public outcry, a federal investigation, and a lawsuit,
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the study was finally shut down in 1972— 40 years after it began
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and 30 after a treatment for syphilis had been found.
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No evidence of any racial difference was discovered.
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When the study ended, only 74 of the original 600 men were alive.
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40 of their wives and 19 of their children had contracted syphilis,
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presumably from their husbands and fathers.
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In the wake of this tragedy, and concerns about similar experiments,
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Congress passed new regulations for ethical research and informed consent.
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But systemic racism continues to permeate medical care and research
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throughout the US.
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To truly address these issues,
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the need for structural change, better access to care,
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and transparency in research remains urgent.
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