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Reverby

Q:  What was the Study?

Government
doctors from the United States Public Health Service (PHS) found approximately
400
African American men presumed to all have late-stage, and therefore
not infectious, syphilis in and
around Tuskegee in Macon County, Alabama
beginning in 1932. After some initial treatment was
given and then stopped
because of lack of funds, the PHS provided aspirins and iron tonics
implying
through deception that these were to cure the men’s “bad blood.” What
had started as a
short treatment program became a study on the presumed “natural
history” of late stage syphilis
without treatment.  PHS doctors
also told nearly 200 controls—men without the disease—that
they
were being cared for with the same simple medications. In the end
624 men were in the Study
(some were switched from the control to the syphilitic
category). The only permission asked for was
the right to autopsy the bodies
after the men had died in exchange for payment for a decent burial.

Doctors and a nurse connected to the county health department,

the venerable black educational
institution Tuskegee Institute (now Tuskegee
University) and the Tuskegee Veterans
Administration Hospital (now the Central
Alabama Veterans Health Care System—East Campus)
provided assistance,
did the x-rays, tests, and autopsies. Given the complexity of syphilis,
many of
the men survived their disease while others were felled by it. Those
still infectious could have
passed it on to wives or sexual partners, and
through them to a fetus in utero.

The Study went on for forty years between 1932 and 1972, through
the Depression, the second
World War, the Cold War, into the civil rights era,
as a changing number of administrators, doctors
and nurses made it possible.
It began at a time when there was “modern treatment” for syphilis
with heavy metals (forms of mercury, arsenic and bismuth) and continued into
what is usually
considered the curative penicillin era of the post World War
II years. It was finally ended in 1972
because of a public outcry over the
failure to inform the men of their disease or to really treat them.

Q:  Did the doctors inject the men with syphilis?

No. There
is absolutely no evidence that the men were given or injected with the bacteria
that
causes syphilis. Syphilis is extremely difficult to transmit except through
sexual contact, from a
mother who is infectious to her child when she gives
birth, or from a wet nurse to a baby or an
infected child to a wet nurse.  The
photographs of the doctors drawing blood in the Study are
sometimes misinterpreted
as showing the men begin given the disease. This is not true. The
photographs
of the spinal taps in the Study (used to diagnosis neurosyphilis) are not pictures
of the
injection of the disease.

Q:  What exactly is syphilis and its history?

Syphilis is a sexually transmitted disease that is passed from person

to person from contact with
sores that contain bacteria. Known by many
names, including the great pox, lues venerea, orbad
blood, it
was dreaded for nearly half a millennium until the age of modern antibiotics.
Debates
linger over where syphilis, caused by the spiral-shaped treponema
pallidum bacterium, first
appeared. It is seen as the disease of
the “other” brought to the New World by Columbus’s
debauched men or, it is as strongly argued, taken to Europe in their
bodies as a form of biological
revenge. It first came ashore in Naples
and then swept through country after county in the endless
wars of the
early 16th century causing “the syphilization of Europe” and
acquiring its label as the
disease left behind by marauding armies
of strangers.

Over the
next five centuries, the disease's "natural history" began
to be mapped, although many
medical debates ensued, and its transmission modes
acknowledged. While the disease's virulent
effects on human
bodies changed over the centuries as disease and host accommodated
to one
another, by the 20th century knowledge of its phases was beginning
to be understood even as
debates raged over this complex disease.
In its earliest and most contagious stage, syphilis is
primarily
passed through sexual contact. The bacterium can also enter a fetus
or an infant at birth
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through its infected mother, or transfer from

a syphilitic infant to a wet nurse. In adults, a few
weeks after
the spirochetes enter the body, a chancre or primary sore that is
often not painful or
even noticed appears, usually at the point of
exposure on a penis, in a vagina or anus, or on lips.
Infected fetuses
can become stillborn, die as infants, or develop as children with
blindness,
deafness, abnormal nose and teeth formations, and neurological
complications.

Several
weeks to months later, either before or after the sore disappears,
the disease enters its
second stage. An eruption of lesions in the
form of a rash occurs more generally across the body
accompanied
by weakness, headaches and severe pains. This too abates and with
it the disease’s
ability
to be passed along to others. In the third stage, there is a latency
period where no visual
signs of the disease exist and the health
of the individual does not seem in jeopardy. This may last
anywhere
from several years to decades to the rest of the life of the infected
person.

Once
this latency ends, however, in late latency the spirochetes can attack
almost any organ or
structure of the body. Syphilis was an ugly and
loathsome disease made more so by the stigma of its
primary transmission
through sexual contact and its ability to emerge years later elsewhere
in the
body, causing a sufferer’s eyes to be blinded, a heart to stop, or a mind
to be obliterated. Received
medical wisdom when the Study began posited
racial and sexual differences affected the disease’s
path, with African
Americans “expected” to have more cardiovascular complications
while various
neurological defects were supposed to be felt by whites.
(The evidence in the end does not support
these differences, however.)

Treatments
began as soon as the disease emerged. Mercury as a cure for skin diseases
was
imported to Europe from Arabic physicians by the early 1500s and used
extensively along with a
host of other herbal, medicinal and biologic agents
from guiac tree bark to sarsaparilla tonics. Its
usage led to the adage, “A
night with Venus, a lifetime with Mercury.” By the early 20th century,
the spirochete had been identified, blood tests to determine its presence
seemed to make certain
diagnosis possible, and German research led to the
focus on arsenic compounds as the “magic
bullet” for the disease.
By the l920s, months of treatment with various combinations of heavy
metals—mercury,
arsenicals, and bismuth—shaped what was seen as the “modern” treatment,
especially for the early stages of the disease in adults, while a focus
on fever therapies, particularly
the introduction of malaria, was thought
to aid in treatment of neurosyphilis.

By the time
the study began in 1932, concern over treatment, debates over racial
and gender
differences, and the problematic accuracy of the blood
tests filled medical journals and texts. It was
becoming clear that
not everyone died from the disease or even became seriously sickened
by it.
From a public health perspective, as Surgeon General Thomas
Parran argued in 1938, “with one or
two doses
of an arsphenamine, we can render the patient promptly non-infectious, not
cured.” The
medical debates continued for the next decade until it was
found that the new “miracle” drug
penicillin could usually
eradicate the disease in its earliest stages and perhaps even in
latency if the
organ damage had not yet been done. Even after penicillin, the study
continued for another three
decades until media attention and public
outcries brought it to a close.

For
more on syphilis, see www.cdc.gov/std/Syphilis/STDFact-Syphilis.htm.

Q:  How does syphilis pass between people?

Syphilis
is a sexually transmitted disease. It is not hereditary, that is it cannot
be passed down from
one generation to another. It has to be passed either through
sexual contact (penis, vagina, anal,
oral), or from an infected breast to a
baby, from an infected baby to a wet nurse, or from an
infected mother to her
child at birth.  It is therefore called a congenital, not a hereditary,
disease.

Q:  Did the PHS doctors think they were harming the men?

No.  The
PHS doctors thought they were helping because there was a medical debate over
whether
or not to treat those who were in the late latent stage of the disease.  Many
doctors believed the
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heavy metals treatment, although commonly used, might

actually be harming not helping.  Others
thought that in an under-served
area like rural Alabama the men would not likely to be treated
after they passed
out of the infectious stage.

By the time penicillin became available after World War

II individuals in the Study might have
been helped by it. Others
might not have because the damage the disease did to their bodies
could
no longer be fixed by penicillin.  Some
of the PHS doctors also believed that doing this kind of
research was necessary
to understand the disease.  It was also common at the time not
to ask for
formal written informed consent or to really explain to
either subjects or patients exactly what was
being done.

Q:  What happened to the men's wives and children?

The PHS
was supposed to only select men who could no longer pass the disease on to
others
because they were in the late latency stage. This may have not been
true.  When the Study ended
there were 22 wives, 17 children, and 2 grandchildren
who tested positive for syphilis.   They
received lifetime medical
and then health benefits from the CDC (Centers for Disease Control). The
last
widow of one of the men in the Study died in 2009.

Q:  Did everyone who had syphilis in the Study die from it?

No. The
disease can affect differing organs of the body and can cause other illnesses
and death. It
used to be called “the great imitator” because its
affects looked like numerous other diseases.  Its
damage to the body varies
by individuals. Even with the available medical records, it is not clear
exactly
how many of the men had their lives shortened and their health compromised.

The reports
and medical files reveal the damage: up until the last years of the Study
those who were
assumed to have syphilis did much worse than the controls.
Life tables created in 1955 showed that
at least for the younger men in the
Study, aged 20-50, those assumed to have syphilis had a 17%
shorter life
expectancy. They became sicker and died sooner (the controls on average at
70 and the
untreated and inadequately treated syphilitics at 65).

The initial
news stories, based on the published articles, estimated at least 28 of the
men and as
many as 100 “died as a direct result of untreated syphilis” while
other accounts circulate that make
it appear as if all the men died from
the disease. Given that the categories for how to report cause of
death shifted
over the years, the failure to have records on the men who passed away after
the
Study closed, and the differences between the autopsy reports and tissue
data, we will never know
this number exactly. From the medical records syphilis
was the cause of death in at least 16 of the
men.

Q:  Did the men ever get treatment during the Study?

At the beginning,
the PHS did provide some treatment then stopped it due to lack of funds.  They
then circulated names of the men in the Study to local physicians and tried
to keep those eligible
for the draft during World War II from the armed forces
where they would have been treated.
However, over the years as many of the
men still living left Macon County, or the Study faded into
the background,
some of the men were able to get treatment elsewhere without the knowledge
of
the PHS. The evidence for some of their treatment is available in their
medical records at the
Southeast Regional National Archives in Morrow, Georgia.  This
treatment may or may not have
changed the course of the illness in individual
men.  After the Study ended, any of the men still
alive who agreed to
government assistance were given penicillin.  They then received life
time
medical and then health care paid for by the U.S. government.

Q:  Was the Study a secret?

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No. There
were more than a dozen reports about the Study published in major medical journals
and it was taught in medical schools.  The term “volunteer” was
used in several of the reports so it
is possible to read them and assume that
the men knew what they getting into rather than being
deceived.

Q:  How many men were involved?

We will
never know exactly how many men were involved in the maltreatment that occurred.
The
PHS recruited nearly all of the men (81%) between 1932 and 1934. Others
were found over the
years, with the largest group of another approximately
18 added in 1938 and 1939. The published
reports give conflicting numbers from
a high of 634 to the usually quoted figure of 399 subjects and
201 controls,
giving a total of 600 as a round and memorable number. The CDC’s final
count in
1974, based on the medical records, is 427 with the disease and 185
controls, plus 12 controls
switched to the syphilitic arm for a total of 624.

Q:  Why only African American men?

There had
been an earlier 20th century study done in Oslo, Norway that suggested lack
of
treatment in the later stages of syphilis would not be as harmful as once
thought.  Because the PHS
and other physicians assumed the disease was
different in African Americans, they believed a study
in the United States
of black men would provide differing data.  Men were chosen, rather than
women too, because it is easier to see a syphilitic lesion (sore) on a penis
rather than inside a
vagina. Women, if in the primary and secondary stages
of the disease, could possibly pass it on to a
fetus if they were pregnant
and the PHS was concerned in this way about congenital syphilis.

Q:  Why in and around Tuskegee, Alabama?

The Study
grew out of syphilis control and treatment program run by the PHS and the Rosenwald
Foundation that took place in six counties in six different southern states
between 1929-1931.  This
was a demonstration project to show how surveillance
and control of syphilis could be done in rural
and mostly black counties. It
ended when both the PHS and the Rosenwald Foundation ran out of
funds during
the height of the Depression.  Given the high incidence of syphilis found
during this
project, and the availability of a new health department and a
black-run hospital in Tuskegee, the
PHS decided to try this new study beginning
in 1932. The Study began as a treatment program that
was then halted for lack
of funds and became a research study to watch what happened when late
latent
syphilis went untreated.

Q:  Why is it called the Tuskegee Study?

The
formal title of the Study in its first medical publications was “Untreated
Syphilis in the Male
Negro.”  Beginning in 1954, the
publications after that called it “the Tuskegee Study of
Untreated
Syphilis” or “the Tuskegee Study.”  It
is not uncommon to name medical studies after the
geographic location
where they are done.  When the newspaper story on the Study
broke in 1972, 
the AP reporter Jean Heller called it “the
Tuskegee Study” and the term “the Tuskegee Experiment”
is
often used as well.

Q:  Did anyone try to stop it?

Yes. Beginning
in the 1950s, the PHS doctors received letters from other physicians and an
epidemiologist raising questions about the ethics of the Study. Beginning in
the 1965, Peter Buxtun,
then a disease investigator for the PHS, began to raise
questions.  He sent questions to the Centers
for Disease Control (CDC)
researchers who took over running the Study from the PHS. Finally he
gave his
information to an Associated Press (AP) reporter and the story went out into
newspapers
across the country in July 1972.  Over the next year,
there was a public outcry, a federal
investigation, Senate hearings, and a
lawsuit.

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Q:  How was Tuskegee University (then called Tuskegee Institute)

involved?

The U.S.
Surgeon General asked Tuskegee Institute to provide care for the men, to assist
with the
blood tests, x-rays, and to perform autopsies.  The Study did
have the endorsement of the various
medical directors of the John A. Andrew
Memorial Hospital (now closed) on the campus. 
Autopsies were also done
at the Tuskegee Veterans Hospital, a federal facility, now called the
Central
Alabama Veterans Health Care System, Tuskegee-East Campus. Nurse Eunice Rivers
Laurie, who worked as the liaison between the men and the PHS, was a Tuskegee
Institute graduate
who also did work at the Macon County Health Department
and taught nursing at the Institute
while she worked on the Study.

Q:  Were the men from the famed World War II Army Air Corps called
the “Tuskegee Airmen”
involved?

No.  Although
the first government program to train black men for the Army Air Corps was
sometimes called the “Tuskegee Experiment,” the men in the flight
training had nothing to do with
the Study.  There is sometimes confusion
on this because of the title of the flight program and
because Laurence Fishburne
stared in two HBO movies, one about the airmen and one about the
Study.

Q:  Did any of the doctors receive punishment for this?

No.  Many
of the doctors who started the Study had passed away or were senile by 1972.  Those
living were never charged with any criminal misconduct, although attorney Fred
D. Gray sued
several of them on behalf of his clients who were survivors or
heirs of the men in the Study.  The
case was settled out of court.

Q:  Why does the term “Tuskegee”  get

used to explain mistrust of doctors and a conspiratorial view
of the government?

There are
many reasons. The Study went on for forty years and is considered the longest
running
non-treatment study of its kind. The power of the government, not just
doctors, made it possible. 
The men were not told they were in a study
but thought they were being treated.   Because the story
of the Study
came out in the media around the time of debates over informed consent and
medical
research, it is remembered.  It is assumed falsely that this was
done without anyone knowing about
it and that the men were also infected by
the government.

Those
who know more about African American history also link it sometimes to the
assumed racial
politics of Booker T. Washington, Tuskegee Institute’s
founding principal.   The Study is also taught
in bioethics courses,
in on-line ethics training for researchers, and for those involved with
institutional
review boards that oversee medical research.   It is a word that
becomes a metaphor,
or a symbol, for ways in which science and medicine ignores
the needs of patients and for racism in
research.  The Study, however,
is not the only example of the use of black men's and women's
bodies
for research.

Q:  Was there ever a formal apology from the government?

Yes.  In
1996 a group of health care professionals, historians, ethicists, Tuskegee
University faculty,
and community health activists formed a committee to ask
the federal government and the
President for an apology. A letter asking for
the apology was sent to then President Bill Clinton. 
After political
pressure from other community groups, attorney Fred D. Gray, the Black
Congressional
Caucus, and professionals within the CDC to honor the request, President Bill
Clinton issued the apology on May 16, 1997 in the East Room of the White House
with five of the
remaining survivors, their families, and hundreds of others
present.  It was covered extensively in
the media, broadcast on C-SPAN,
and in a special link to an auditorium at Tuskegee University.

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Q:  How can I find out who was in the Study?

The names
of the men who were in the Study and most of their medical records are available
at the
Southeast Regional National Archives in Morrow, Georgia. See
www.archives.gov/southeast/index.html.  These
are open to the public. A list of their names is
available in Examining
Tuskegee.

Q:  Where can I find out more information on the Study.

The major records about the Study are open to the public and are
in the National Archives in
College Park, Maryland and Morrow, Georgia.  Records
of the federal investigating committee are
in the National Library of Medicine
in Bethesda, Maryland.  The Tuskegee University Archives hold
records
on their hospital and nursing programs.  For more information,
see both Tuskegee’s Truths
and Examining Tuskegee,
which also contain bibliographies that list other sources.

Q:  Could a study like this happen again?

There are
principles and practices in place to keep this kind of study from happening
again in the
United States.  Researchers are held to higher standards
of informed consent and institutional
review boards usually approve studies
before they can go forward.  There has been concern that
there are limits
to how well informed consent works and that studies similar to this may be
going
on outside the United States.

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