What Really Happened at Tuskegee?

Revisiting the Syphilis Study:
What Really Happened at Tuskegee?
Quincy J. Byrdsong, Ed.D., CIP, CCRP
Vice President for Academic Planning and
Strategic Initiatives
Augusta University
Information for this presentation has been retrieved from
“The Tuskegee Syphilis Study” by Fred. D. Gray, attorney for
the human subjects involved
Learning Objectives
• Analyze myths and assumptions regarding the Syphilis
Study
• Describe the scientific rationale for conducting the
Syphilis Study
• Chronologize the Syphilis Study with responses to
ethical dilemmas
• Identify lessons learned and impact of human subjects
research today
True or False?
Address the following statements:
• The human subjects in the Syphilis Study knew they were
in a research study but just did not know what the study
was about.
• The human subjects in the Syphilis Study were injected
with the syphilis bacteria.
• The Syphilis Study was conducted on the Tuskegee
Airmen.
• The Syphilis Study is an example of inequitable subject
selection.
• The researchers tricked the human subjects into
participating in the Syphilis Study by calling the disease
“bad blood” instead of “syphilis.”
Myth #1: The human
subjects in the Syphilis
Study knew they were in a
research study but just did
not know what the study
was about.
Myth #2: The human
subjects in the Syphilis
Study were injected with
the syphilis bacteria.
Between 1929 and 1931, the Public Health Services
surveyed six rural areas in the South. The highest
prevalence of syphilis was found in Macon County,
Alabama. A more focused program in Macon County
(36% of the population had syphilis) found that virtually
none of the cases had been treated.
Eligibility criteria (1932-33): black male with syphilis for
at least five years*; had not received treatment
*in 1933, a control group of non-syphilitic men were
added
Myth #3: The Syphilis
Study was conducted on
the Tuskegee Airmen.
Although the antibiotic, penicillin, was discovered
around 1928, it was not considered to be an effective
treatment for syphilis until around 1945. A Lieutenant
Colonel in the United States Army was one of the first
to introduce a higher dose therapy for neurosyphilis.
This work became instrumental in establishing the
standard practice for treatment of syphilis and was
eventually widely used in military populations
contracting STDs.
However, the Public Health Service rigorously
discouraged enlistment of the subjects into the military
as well as denied them participation in treatment
programs sponsored by the health department.
Myth #4: The Syphilis
Study is an example of
inequitable subject
selection.
According to the Belmont Report, the third ethical
principle, justice, is most readily manifested by
ensuring that there be equitable procedures and
outcomes in the selection of research subjects. The
social level of subject selection requires a distinction
be drawn between those benefitting and those
burdened. The individual level of subject selection
requires fairness; not offering pleasant research to just
those found in favor of the investigators but also not
offering risky research just to subjects considered to be
undesirable.
In the case of the Syphilis Study, the research
questions could only be answered through collecting
data from Black males with syphilis. Since both this
location and this population had the highest incidence,
subject selection was reasonable.
Myth #5: The
researchers tricked the
human subjects into
participating in the
Syphilis Study by calling
the disease “bad blood”
instead of “syphilis.”
During the era in which the Syphilis Study began, the
general topic of venereal or sexually-transmitted
disease (STD) was considered taboo. To discuss a
sexually-transmitted disease, a discussion regarding
sexual activity, sexual intercourse, and the cleanliness
and function of sexual organs would also have to take
place.
Society was uncomfortable with these
conversations and since it disproportionately affected
the poor, even doctors were disinterested in
acknowledging the damage it could potentially do to a
population.
Since syphilis was not openly discussed and
consequently not well understood, it was also not used
with the human subjects in the Syphilis Study. The
terminology “bad blood” was used instead since it was
a common local term used for illnesses ranging from
STDs to anemia to fatigue.
Did a study of untreated syphilis in the
Negro male in Macon County,
Alabama have any scientific merit?
Scientific rationale for
the Syphilis Study:
•
Although studies by American’s syphilologists showed that 80 percent
would suffer active lesions, a study of untreated syphilis in Oslo, Norway
showed only 37 percent developed active lesions. More research was
needed to address this marked disparity.
•
Syphilis had become an epidemic for Macon County but, very few
researchers were willing to do research in this area or any other STD.
Considering this indifference, the Syphilis Study would serve as the
counter more responsible approach from the public health standpoint.
•
Poorly designed studies of syphilis showed complications of heart
disease in Blacks but, neurological complications in Whites. Since the
study in Oslo was on White Norwegians only, there was a need for
comparative data.
•
Males were chosen because of their external sex organs which
increased their likelihood of noticing lesions and determining time of
infection.
Macon County, Alabama - 1932
•
Deep South – Top of the “Black Belt”
– Conveniences
– Technology
•
Center of the cotton culture
•
Of the 27,000 population, 22,000 were Black.
– Rigidly segregated
– Only two incorporated towns: Notasulga
and Tuskegee
•
Some educated at the Tuskegee Institute
– Attributed much of it fame to George
Washington Carver
– Friendship formed between Institute
Founder Booker T. Washington and
philanthropist Julius Rosenwald
The Rosenwald Fund
•
Julius Rosenwald(1862 – 1932)
– Jewish-American businessman and philanthropist
– Co-owned Sears, Roebuck, and Company
– President and and Founder of the Museum of
Science and Industry
– Established the Rosenwald Fund
•
The Rosenwald Fund
– Patron of Booker T. Washington and the
Tuskegee Institute
– Financed the construction of many schools for
Black students
– Partnered with the Public Health Service to
expand medical services to poor Black areas in
the South
Timeline of Events
•
1930 – Spends $50K for syphilis treatment
demonstrations in six states (Alabama: Macon
County)
•
1931 – Rosenwald funding is cut for treatment
programs; physicians decide to follow the men
diagnosed untreated
•
1932-33 – Follow up becomes a study of 399
syphilitic and 201 controls.
•
1945 – Penicillin accepted as the preferred treatment
for syphilis
•
1947 – PHS establishes treatment centers, penicillin
widely used in military operations
•
1968 – Concerns raised about the study
•
1969 – CDC reaffirms the need for the study
•
1972 – Study condemned in major news outlets;
study ends
What did we learn from
“The untreated syphilis in the Negro male”
Study?
Lessons Learned
•
Anyone could potentially be vulnerable as a subject of research
– Location
– Environment
– Status
•
Respect for persons is much more than obtaining informed consent
– Trust
– Communication
– Compassion
•
The good of science can never be considered over the importance of
human life
– Accountability
– Responsibility
– Judgment
Questions to consider
• Why was the Syphilis Study allowed to go so long?
• Why was the PHS so interested in answering this
research question?
• Is deception research ever appropriate?
• Considering how epidemics can wipe out a
population, could this Study have been done if it
were designed differently? Describe.
• How has your knowledge of the Syphilis Study
impacted how you approach your work in clinical
research?
Discussion