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