The Tuskegee syphilis experiment was an infamous clinical study conducted between 1932 and 1972 by the U.S. Public Health Service to study the natural progression of untreated syphilis in rural African American men who thought they were receiving free health care from the U.S. government

1. THE TUSKEGEE STUDY/EXPERIMENT
H. L. Edmonds, MEd

2. OBJECTIVES
• To describe the facts surrounding the
Tuskegee Syphilis Study
• To understand the need for ethical guidelines
to govern epidemiologic research
• To understand the impact of the Tuskegee
Syphilis Study on epidemiologic research
• To recognize key components that underlie
contemporary research

3. Tuskegee Study of Untreated Syphilis in the Negro Male
In 1932, the Public Health Service, working with Tuskegee Institute, began an
epidemiologic study to record the natural history of syphilis in hopes of
justifying treatment programs for blacks. It was called the "Tuskegee Study of
Untreated Syphilis in the Negro Male." Epidemiologic studies are intended to
examine patterns, causes and effects of health conditions in defined
population groups in order to impact public policy and practice.
The Tuskegee Study did not follow normal epidemiologic protocol and
became an experiment by the United States Public Health Service (PHS) to
ascertain the impact of untreated late stage syphilis on African American men
that lasted forty years from 1932 to 1972.
Tuskegee Institute campus, 1916

4. 600 African American Men From Rural Macon County Alabama
The experiment tracked nearly 400 men
assumed to have syphilis and nearly 200
controls assumed to be disease free. The
men were poor and mostly illiterate African
American sharecroppers from rural Macon
County, Alabama.
For forty years, the PHS came back into
Macon County for testing and follow-up of
the men promising them money for their
families for burial in exchange for the right
to autopsy them at death. During the whole
40 years of the study the men were denied
any affective treatment even after 1947
when penicillin had become the standard
treatment for Syphilis.

5. Poor and mostly illiterate African American sharecroppers in
rural Macon County, Alabama were recruited for the study.

6. The United States Public Health Service (PHS)
Taliaferro Clark with the PHS is credited with the
original design of the Tuskegee Study. In order to
make the study acceptable to the blacks in the
area, Clark solicited the participation of Tuskegee
Institute (a well-known historically black college
in Alabama, now known as Tuskegee University)
and also the inclusion of the Arkansas regional
PHS office.
Clark’s initial goal was to follow untreated syphilis
in a group of black men for 6 to 9 months, and
then follow up with a treatment phase.When he
understood the intention of other study members
to extend the study and use deceptive practices,
Clark disagreed and retired the year after the
study began.

7. Depression Era U.S. Poster Advocating Early Syphilis Treatment
Beginning in 1932 after some initial
treatment was given and then stopped
because of lack of funds during the Great
Depression, 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 treatment
program quickly became an experiment
in the effects of late stage syphilis
without treatment. The only permission
asked for was the right to autopsy their
bodies after the men had died in
exchange for payment for a decent burial.
Although penicillin was available for treatment in the 1947, study participants
never got any treatment.

8. TREATMENT FOR “BAD BLOOD”
The men were informed that they were
being treated for “bad blood. The
doctors had no intention of curing them
of syphilis at all. The data for the
experiment was to be collected from
autopsies of the men, and they were
thus deliberately left to degenerate
under the ravages of syphilis—which
can include tumors, heart disease,
paralysis, blindness, insanity, and death.
One of the doctors involved in the study
explained, “As I see it, we have no
further interest in these patients until
they die.”

9. Using Human Beings as Laboratory Animals
The true nature of the experiment had to be kept from the subjects to ensure their
cooperation. The sharecroppers' grossly disadvantaged lot in life made them easy to
manipulate. Pleased at the prospect of free medical care—almost none of them had ever
seen a doctor before—these unsophisticated and trusting men became their pawns.

10. Potentially Dangerous Spinal Tap
To ensure that the men would show up for a painful and potentially dangerous
spinal tap, the PHS doctors misled them with a letter full of promotional hype:
“Last Chance for Special Free Treatment.” The fact that autopsies would
eventually be required was also concealed.

11. A Heavy Price to Pay in the Name of Bad Science
By the end of the experiment, 28 of the men had died directly of syphilis,
100 were dead of related complications, 40 of their wives had been
infected, and 19 of their children had been born with congenital syphilis.

12. Certificate for Participants in the Syphilis Study
In 1958 this certificate was
provided to participants in the
Tuskegee Syphilis Study after 25
years.
The PHS leaders employed many strategies
to keep the subjects happy with their
involvement in the study so that as many
as possible could be "brought to
autopsy." This special certificate was
distributed to all surviving participants in
1958, and praises them for their
involvement in the "Tuskegee medical
research study." Even at this late date the
men did not know that the disease for
which they were being observed, and not
adequately treated, was syphilis.

13. Tuskegee Syphilis Study: Incentives

14. Tuskegee Institute Helped the Public Health Service (PHS)
Eugene Dibble an African American
doctor, head of the John Andrew
Tuskegee Medical Hospital, lent his
endorsement to the study. Also,
Eunice Rivers, an African-American
registered nurse trained at Tuskegee
Institute was recruited at the start of
the study because she had a strong
direct link to the black community.
Several African American health workers and educators associated with
Tuskegee Institute helped the PHS to carry out its experimentation and played
a critical role in the progression of the study. However, it is not clear the extent
to which they were aware of the deceptive methodology used in the study
protocol. Robert Moton, the head of Tuskegee Institute at the time gave
credibility to the study with his endorsement and institutional resources to the
government study.

15. Alternative Choices Available to the US Public Health Service
During the study the USPHS sought on several occasions to ensure that the
subjects did not receive treatment from other sources. To this end the doctors
met with groups of local black doctors to ask their cooperation in not treating the
men. Lists of subjects were distributed to Macon County physicians along with
letters requesting them to refer these men back to the USPHS if they sought care.
Available choices of the doctors:
• Treating all syphilitic subjects and closing the
study.
• Splitting off a control group for testing with
penicillin.
• Instead, the Tuskegee scientists continued the
study without treating any participants and
withholding penicillin and information about it
from the patients.
Public Health doctors and scientists prevented participants from
accessing syphilis treatment programs available in others areas.

16. A Blood Sample During The Tuskegee Syphilis Study
There were more than a dozen reports
about the Tuskegee Study published in
major medical journals. The study was
taught in medical schools. The term
“volunteer” was used in several of the
reports as if the men knew what they
were getting into rather than being
deceived.
None of the doctors were ever
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.

17. The USPHS Defended The Ethics Of The Study
In 1972 the Tuskegee Study was brought to public and
national attention by a whistleblower, who gave
information to the Washington Star and the New York
Times.
Heller of PHS, who in later years of the study led the
national division, defended the ethics of the study, stating:
"The longer the study, the better the ultimate
information we would derive."
Dr. Heller in charge of on-site medical operations in the Tuskegee Study for many
years before he became director of the venereal disease section of PHS (1943-
48). Heller's leadership coincides with the years when penicillin was introduced
as routine treatment for syphilis in PHS clinics, and when the Nuremberg Code to
protect the rights of research subjects was formulated. Heller stoutly defended
the ethics of the study and claimed that he saw no association whatever
between the unethical experiments performed by the Nazis and the Tuskegee
Syphilis Study.

18. Four Comments Made By Doctors Who Were Part Of The Study
“This state of affairs is due to
the scarcity of doctors, rather
low intelligence of the Negro
population, depressed
economic conditions, and very
common promiscuous sexual
relations of this population
group.”-- Dr. Clark
“As I see it, we have no further
interest in these patients until
they die.”-- Dr. O.C.
“it is my desire to keep the main purpose of the work from the Negroes in the County and
continue their interest in treatment.”-- Dr. Vonderlehr to Dr. Clark
“Unless the law winks occasionally, you have no progress in medicine.”-- John Cutler

19. Jean Heller of the Associated Press Breaks Story
The final phase of the study occurred from 1965
to 1972. Over two-thirds of the original
participants were deceased, and the other 200
were difficult to locate. The climate of race
relations had changed drastically in America, and
many of the participants involved in the study
were beginning to reexamine the morality of the
study. Even with these differences and
difficulties, the study continued on until the
summer of 1972, when the story was revealed
nationwide in an article by Jean Heller of the
Associated Press in the Washington Star.
After Heller drew national attention to the study it was abruptly stopped. The
PHS, however, remained unrepentant, claiming the men had been “volunteers”
and “were always happy to see the doctors,” and an Alabama state health
officer who had been involved claimed “somebody is trying to make a
mountain out of a molehill.”

20. Over the years of the study, it continued to be a scientific experiment using the poor black
males of Macon County to determine the long term effects of syphilis. The subjects believed
they were receiving medical treatment, yet they were actually getting placebos.
In 1972 the Centers for Disease Control (CDC) finally ended the study. The remaining
subjects each received a minimal financial settlement. Interestingly, while the public was
not aware of the alleged research malfeasance committed in Macon County, the scientific
community, especially some of those studying venereal disease and social epidemiology,
were quite aware of the true nature of the study. Moreover, the findings had been shared in
mainstream medical journals over the years. Therefore, the experiment, its procedures, and
findings were well known and institutionalized within the medical community.

21. The Main Highly Unethical Parts Of The Study
1. The U.S. government violated the constitutional rights of the participants.
2. The government knew the participants had syphilis and failed to treat them.
3. The participants had to agree to an autopsy after their death, in order to have their
funeral costs covered.
4. The Public Health Service failed to fully disclose to participants that they had syphilis,
and were participating in the study, and that treatment was available for syphilis.
5. The study became unethical in the 1940 when penicillin became the recommended
drug for treatment and researchers never offered it to study participants.
6. The Public Health Service led the participants to believe that they were being properly
treated for whatever diseases they had, when in fact, they were not being meaningfully
treated.
7. The Public Health Service failed to obtain the participants’ written consents to be a part
of the study.
8. The Study was racially motivated and discriminated against African Americans in that no
whites were selected to participate in the Study.
9. Researchers used a misleading advertisement; advertising for participants with the
slogan; "Last Chance for Special Free Treatment". The subjects were NOT given a
treatment, instead they were recruited for a very risky spinal tap-diagnostic.
10. There were no rules and regulations governing the Study.

22. Medical ethics
considerations were
limited from the start and
rapidly deteriorated!
To ensure that the men would show
up for the possibly dangerous,
painful, diagnostic, and non-therapeutic
spinal taps, the doctors
sent the 400 patients a misleading
letter titled "Last Chance for Special
Free Treatment". The study also
required all participants to undergo
an autopsy after death in order to
receive funeral benefits. After
penicillin was discovered as a cure,
researchers continued to deny such
treatment to many study
participants.
This letter is reproduced from an educational
website at the University of Illinois’s Poynter
Center

23. How Tuskegee Changed People’s Lives
As the truth emerged about what happened during those four decades in Tuskegee, we
learned a lot about what can happen when scientific ends take precedence over basic
human rights. The men of Tuskegee were treated, not as autonomous human beings
deserving of respect and dignity, but as a means to an end. Recruited into the study with
half-truths and euphemisms, they were kept there with outright lies and denied simple,
affordable treatment because their lives and their sex partners ware deemed expendable.
These men, have been the subject of countless academic studies, news
articles and books, as well as a play and a made-for-television movie. Yet
their wives and children they may have unwittingly exposed to the
disease -- have remained largely unseen and unheard, bearing in silence a
legacy of anger and shame as well as possible damage to their health. In
an acknowledgment of the harm that may have been done, the Federal
Government, since 1975, has been quietly running a small program that
provides medical benefits to family members infected with syphilis.
• ''You get treated like lepers,'' said Albert Julkes Jr., 55, whose father was a
participant in the project the Government called the Tuskegee Study of
Untreated Syphilis in the Negro Male.
• ''People think it's the scourge of the earth to have it in your family.''

24. $10 Million Out-of-court Settlement For Men And Their Families
Attorney Fred David Gray, a civil rights
activist, attorney and preacher practicing
law in Alabama served as the President of
the National Bar Association in 1985. He
was elected the first African-American
President of the Alabama State Bar in 2001.
In 1972 under the glare of publicity, the government ended their experiment,
and for the first time provided the men with effective medical treatment for
syphilis. Attorney Fred Gray who had previously defended Rosa Parks and
Martin Luther King, filed a class action suit Pollard vs. United States of America,
that provided a $10 million out-of-court settlement for the Tuskegee study men
and their families.

25. Official Apology In 1997
President Clinton said,
“the United States
government did
something that was
wrong—deeply,
profoundly, morally
wrong. It was an outrage
to our commitment to
integrity and equality for
all our citizens … and I am
sorry”
On May 16, 1997, President William J. Clinton called the Tuskegee Study survivors
and descendants to the White House for a formal apology for the United States’
role in the study.

26. African Americans Distrust of Medical Institutions
The Tuskegee Syphilis Study
continues to cast its long shadow
on the contemporary relationship
between African Americans and
the biomedical community.
Numerous reports have argued
that the Tuskegee Syphilis Study is
the most important reason why
many African Americans distrust
the institutions of medicine and
public health.
However, such an interpretation neglects a critical historical point. The mistrust of
African Americans predates public revelations about the Tuskegee study and has it’s
origin deeply rooted in the institution of slavery as practiced here in the United States.

27. Office for Human Research Protections (OHRP)
After the Tuskegee Study, the government changed its research practices to prevent a repeat of the
mistakes made in Tuskegee. Tuskegee has brought the intersections of race and science to forefront of
the public's perception of scientific research. After the study and its consequences became front-page
news, it was ended in a day. The aftershocks of this study, and other human experiments in the United
States, led to the establishment of the National Commission for the Protection of Human Subjects of
Biomedical and Behavioral Research and the National Research Act. The latter requires the
establishment of institutional review boards (IRBs) at institutions receiving federal support (such as
grants, cooperative agreements, or contracts). This study showcased the disconnect between human
rights and scientific research.
All research conducted or supported by the Department of Health and Human Services
(HHS) requires registering an institutional review board (IRB) and obtaining a Federalwide
Assurance (FWA).
• An institution must have an FWA in order to receive HHS support for research involving human
subjects. Each FWA must designate at least one IRB registered with OHRP.
• Before obtaining an FWA, an institution must either register its own IRB, (an “internal” IRB), or
designate an already registered IRB operated by another organization, (an “external” IRB), after
establishing a written agreement with that other organization.
• An IRB is a committee that performs ethical review of proposed research.
• Other federal departments and agencies that conduct or support human subjects research permit
use of the FWA as the assurance required by their regulations.

28. Community Participation Helped the Study Achieve it’s Purpose
Levels of Community Participatory Research (CPR)
Community notification - inform the community of the intentions of the research risks and
benefits relating to the individuals and communities involved
Community endorsement - community representatives are asked to formally support the
research activities
Community advice - seeking and obtaining community advice in planning, development,
execution, and dissemination of the research.
Community consent - obtaining some expression of community approval.
Community origination - research purpose and goals set by expressed community needs
The Tuskegee Study of Untreated Syphilis : An example of CPR
Community Notification - Churches / Businesses
Community Endorsement - Business Establishments and Nurse Eunice Rivers
Community Advice - The Tuskegee Institute
Community Consent - Macon County Medical Society
Community Origination - The Negro Health Movement and Cultural Competence

29. Bibliography:
Gray, Fred D., The Tuskegee Syphilis Study, Montgomery: New South Books, 1998
Heller, Jean Human Guinea Pigs Used To Study Syphilis: Patients Died
Untreated, Associated Press, (1972)
Jones, James Bad Blood: The Tuskegee Syphilis Experiment (Free Press 1992)
Reverby, Susan M., Examining Tuskegee: The Infamous Syphilis Study and its Legacy, Chapel
Hill: University of North Carolina Press, (2009)
Reverby, Susan, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy, UNC
Press (2009)
Reverby, Susan Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, UNC Press
(2000)
Washington, Harriet A., Medical Apartheid: The Dark History of Medical Experimentation
on Black Americans from Colonial Times to the Present, Anchor Press (2008)
Jones, James H., Bad Blood: The Tuskegee Syphilis Experiment, The Free Press a Division of
Simon and Schuster, December (1992)
Parran, Thomas, Shadow on the land: syphilis, New York : Reynal & Hitchcock (1937)
Other Resources:
Jenkins, Bill Ph.D., M.P.H., Health Disparities: Why We Have Not Solved The Problems, Why
We Need New Approaches, The Research Center on Health Disparities Morehouse College
AM Brandt - Hastings Center Report, Racism and research: The Case of the Tuskegee
Syphilis Study, 1978 - Wiley Online Library