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expressions of remorse by public figures steps toward healing,
or are they acts of cathartic self-indulgence?
stained-glass apology and other reconciliations
of art history, literature, and psychology offer their viewpoints
on the nature and meaning of "apology."
Cartoons on the Tuskegee Study
cartoon by Clifford H. Baldowski, Atlanta Constitution
cartoon by Tony Auth, Philadelphia Inquirer, July 1972
cartoon by Lou Erikson, Atlanta Constitution,July 1972
cartoon by "Roberts," Rocky Mountain News, Denver,
Colorado, July 1972
Academic Exchange September
1999 Contents Page
In the 1940s,
when Nazi doctors went on trial for experiments on humans, the
world heard the term "research crime" for the first
time. Most Americans believed such abuses could never happen
here. On a hot day in July 1972, however, the national front-page
news described an experiment sponsored by the US government.
In Macon County,Alabama, a sample of black men went untreated
for syphilis. Over four decades, as some of them died, the government
went to great lengths to ensure that men in the "Tuskegee
Study" were denied treatment, even after penicillin became
the standard of care in the mid-1940s.
A quarter-century after that public revelation, on May 16, 1997,
President Bill Clinton issued a formal apology for the Tuskegee
Study of Untreated Syphilis in the Negro Male, the longest nontherapeutic
experiment on human beings in the history of medicine and public
health. The study, conducted under the auspices of the US Public
Health Service (PHS), was originally projected to last six months
but spanned forty years, from 1932 to 1972. The purpose was to
determine the effect of untreated syphilis in black men. The
men were never told they had the sexually transmitted disease.
Instead, government doctors told them they had "bad blood,"
a term that was commonly used for a wide range of unspecified
The 600 black men in the study (399 with syphilis and a control
group of 201 who did not have the disease) were the sons and
grandsons of slaves. Most had never been seen by a doctor. When
announcements were made in churches and cotton fields about a
way to receive free medical care, the men showed up in droves.
Little did they know the high price they would pay over the next
four decades as they were poked and prodded by an endless array
of government medical personnel. Even as some men went blind
and insane from advanced (tertiary) syphilis, the government
doctors withheld treatment, remaining committed to observing
their subjects through to the predetermined "end point"--autopsy.
To ensure the families would agree to this final procedure, the
government offered burial insurance--at most fifty dollars-to
cover the cost of a casket and grave.
The project finally stopped after Peter Buxtun, a former phs
venereal disease investigator, shared the truth about the study's
unethical methods with an Associated Press reporter. Congressional
hearings led to legislation strengthening guidelines protecting
human subjects in research. Fred Gray, a civil rights attorney,
filed a $1.8-billion class-action lawsuit on behalf of the men
that resulted in a $10-million out-
of-court settlement for the victims, their families, and their
heirs. Almost twenty-five years later, however, there remains
among many African Americans a legacy of mistrust that hampers
efforts to promote health and prevent disease.
During the ceremony in the East Room of the White House, the
president directed his words to Carter Howard, Frederick Moss,
Charlie Pollard, Herman Shaw, Fred Simmons, Sam Doner, Ernest
Hendon, and George Key, the study's sole survivors, all of whom
are over ninety years old and the first five of whom were present
for the occasion:
The United States
government did something that was wrong, deeply, profoundly,
morally wrong. To the survivors, to the wives and family members,
the children and the grandchildren, I say what you know: No power
on earth can give you back the lives lost, the pain suffered,
the years of internal torment and anguish. What was done cannot
be undone. But we can end the silence. We can stop turning our
heads away. We can look at you in the eye and finally say on
behalf of the American people, what the United States government
did was shameful, and I am sorry.
Clinton and the others present
experienced forgiveness from men who suffered at the hands of
phs doctors. In that emotional statement, he apologized on behalf
of the American people-something his five White House predecessors
had not done. The president placed responsibility for the abuse
on the medical research establishment, stating, "The people
who ran the study at Tuskegee diminished the stature of man by
abandoning the most basic ethical precepts. They forgot their
pledge to heal and repair." The government, Clinton announced,
was providing a $200,000 grant to help establish a center for
bioethics in research and health care at Tuskegee University
as part of a "memorial" to the victims. Shaw expressed
gratitude to Clinton "for doing [his] best to right this
wrong tragedy and to resolve that Americans should never again
allow such an event to occur."
Parts of Macon County still look like they did in 1932. The route
to Tuskegee Square pushes past shaky mobile homes and a decrepit
motel, between eroding embankments of red clay that look like
gashes in flesh. The eight survivors of the study have lived
long enough to see a final chapter in the history of race and
medicine in America. Today, however, they remain economically
poor, living in the same town and attending the same churches
where they were recruited in 1932.
For many black people, the Tuskegee legacy generates anger that
hangs in the air like smoke. People are not laboratory animals.
No one should suffer when a proven treatment is available as
penicillin was for syphilis by the early 1940s. Using people
in medical research without their informed consent, and engaging
in subterfuge to do so, is ethically unconscionable, particularly
when the people are
as vulnerable as the men in the Tuskegee Study because of their
poverty and lack of access to any other medical care.
Remarkably, some people still say the Tuskegee Study was a valid
and well-intentioned effort to learn more about a disease that
was rampant among black men in Macon County. They say the men
were not harmed and probably were helped by taking part in the
study. The government doctors were viewed as progressive compared
to local physicians. The Rosenwald Fund that financed the study
was dedicated to increasing the number of "Negro" health
professionals in the South. It is ironic that during the study
the men had regular visits from government doctors. Today, Tuskegee
has no twenty-four-hour health care. The men in the study trusted
their doctors; today, syphilis remains an epidemic in areas where
many black people do not trust the treatment.
For far too many African Americans, the Tuskegee legacy casts
a shadow over biomedical research, medicine, and public health
practice. It is used as reason not to take advantage of early
treatment for preventable diseases, not to participate in clinical
research. The underrepresentation of blacks as blood donors,
their reluctance to sign organ donor cards, their fear of being
tested for aids, and their hesitancy to have their children immunized
threatens the health and well-being of us all. Trust, once given
unconditionally, now must be earned. How can black people trust
what their doctors tell them, what public health agencies tell
them, when they know the men in the Tuskegee Study had syphilis
and were not treated?
Rebuilding trust begins with an apology from a president who
was not even alive in 1932. Over the years, the Tuskegee legacy
has undergone transformation from science to conspiracy to metaphor.
It is an American tragedy made of a volatile confluence of race
and medicine. It is part of the collective memory of many African
Americans, fueling suspicion and fear toward medical and public
health research. It is still being deeply woven into the tapestry
of American life. An indelible pattern is evolving as each of
us responds to the contingencies and values exposed by Tuskegee.
In a way, the legacy connects us to people who suffer under oppression--from
Africans on the Middle Passage to Native American tribes forced
to extinction, to Holocaust victims, to survivors of apartheid.
An apology is an expression of our humanity, a balm on the sores
of resentment and retaliation. It will not heal all wounds, but
it is an essential gesture in the healing process and a cue to
action for the rest of us to move toward atonement and racial
reconciliation. It may be the first step in addressing the fear
and mistrust that shape the behavior and attitudes of many African
Americans not only toward participating in medical research but
also toward receiving the health care they need and deserve.
Stephen Thomas is an associate
professor of community health and director of the Institute for
Minority Health Research in the Rollins School of Public Health.