A BRIEF HISTORIC REVIEW OF TUSKEGEE SYPHILIS STUDY (1932-1972)

MUHAMMAD HAMZA SHAH

(QUEEN’S UNIVERSITY BELFAST, NORTHERN IRELAND, UK)

Abstract

Tuskegee Syphilis Study (1932-1972) was a diabolical investigation into the natural progression of
syphilis, without the implementation of any intervention techniques. This essay found how
Boeck/Bruusgaard’s work inspired Clark, the architect of this project, and prompted him to reflect back
on the Rosenwald study to identify a pertinent sample. Clark would then seek help from a variety of
different officials in authority and successfully examined approximately 400+ syphilitic male individuals.
Later we see how the study was governed by a range of different individuals (seen from the authors of all
articles) and involvement of Nurse Rivers in securing well-ordered progression of this study. Finally, we
observe how this study was publicly unveiled and its aftermath corresponding to the presidential apology
and impact on minority participation in research.

Introduction

The Tuskegee Syphilis Study represented a polarizing occurrence in the sphere of research ethics,
whereby bad medical practice lead to countless unsolicited deaths of black men in Alabama. The study
was deemed one of the longest experiments ever conducted on human subjects and ran for approximately
40 years. The reason behind its conductance primarily revolved around finding enough evidence to
determine whether leaving latent syphilis untreated could possibly result in its eradication. Considering
the disease itself, syphilis is caused by bacterial spirochete Treponema Pallidum which is transferred
following unprotected sexual contact [1]. It depicts varying symptomatology at different stages and latent
syphilis is viewed to be in accordance with the last stage. In this last stage, characteristic symptoms
disappear for an extended period of time but different organs, most commonly the brain or heart, could be
adversely affected [1].

The study specifically targeted the African-American population due to widespread prevalence of this
disease in black population at the time. While the treatment of syphilis in the form of penicillin was
officially discovered in 1947, the researchers decided to continue the study beyond this. However, the
devastating ramifications of this decision soon became evident after seeing the plight of most participants.
A vast majority of these men were left with permanent physical impairments and emotional scars, none of
which can be compensated in any way. The subjects’ illiteracy was fully exploited by the researchers via
deception about the true aims of the study and withdrawal of treatment when it was readily available
elsewhere. It is quite hard to ascertain why the researchers continued this barbaric conduct despite the fact
that it was of no significance to the medical field and this question still remains to be answered.
Background

The ideology behind the concept of untreated syphilis was already present and being thoroughly
investigated before the study began. Caesar Boeck led an extended investigation into untreated syphilis
from 1891-1901, involving 2200 patients [2]. It’s widely believed Boeck was drawn towards this idea by
William Ferguson’s work in 1812, which showed that usage of mercury on British soldiers had been
ineffective compared to untreated Portuguese soldiers. Similarly, Boeck didn’t believe the mercury-based
treatment options carried any weightage and wanted to determine if withdrawing treatment could be a
solution. He hospitalized the patients and ended up observing the expulsion of disease symptoms within
an average of 3.6 months in some subjects.

These findings were further cemented by the work of Bruusgaard in 1929 who considered 473 (309 alive
and 164 dead) of Boeck’s patients and conducted analyses on different aspects of their lives [3]. He
discovered almost 40% of these individuals were asymptomatic for syphilis and around 4% developed
neurological deficits. While these works were still in their juvenile stages, the Tuskegee Syphilis Study
was eventually launched almost 3 years after Bruusgaard’s work was published. Certainly, Dr. Joseph
Earl Moore of Johns Hopkins University believed Bruusgaard’s study would be grossly misjudged if
leaving syphilis untreated was assumed to be a cure using the results [4]. Perhaps, these unforeseen
results persuaded hopeful researchers at the time to investigate the presence of an explanation behind this
concept of suppressing treatment.

Origin and Beginnings

TSS can trace its origin from the Rosenwald study conducted in 1929, supervised by US Public Health
Service (USPHS) [4]. This was known as the Rosenwald study owing to the fact that it received a
$50,000 endowment from Julius Rosenwald Fund, set up to support struggling African-Americans with
their educational needs [5]. The study intended to establish the extent to which syphilis was spread in the
black population, residing in Southern USA. It was mainly headed by Dr. Taliaferro Clark and focused on
determining the feasibility of launching large-scale treatment programs for syphilis by finding out the
prevalence of the disease. In the latter and more pertinent part of the study (1930-1931), 6 US counties
with highest population of African-Americans were chosen for investigative purposes [5]. A Wassermann
test for syphilitic antibodies was carried out on approximately 40,000 individuals and rates of syphilis
prevalence were identified. Macon County in Alabama was discovered to have the highest rates of
syphilis with 36% of those tested having the illness [4, 5]. This study was perhaps the reason why
researchers were drawn to Macon County, specifically Tuskegee, in the first place. Considering the
increased incidence of syphilis reported here and a predominant black population, it would be
significantly easier for researchers to find test subjects for their experiment.

Indeed, it would be Macon County’s ideal demographic and rampant syphilis prevalence which caught
Dr. Clark’s eye. He spent a year resolving the possible logistics of TSS and pitched the idea to Alabama
state health administrators in early 1932 [6]. These state officials, primarily influenced by director Dr. J.
N. Baker, approved this proposition contingent to treatment of some individuals (later interpreted as those
who would be tested but not included in the study) without any cost to the state. An agreement for the
exact specifics of this treatment was reached between Clark and Baker for the provision of mercurial
pills / 8 doses of neoarsphenamine [6].
Dr. Clark then conferred with Dr. Eugene Dibble at the John A. Andrew Memorial Hospital to assist him
with these aforementioned individuals. Dr. Dibble passed on this request to Tuskegee Institute’s principal
Robert Mutton, explaining the possible favorable implications of the study [5, 6]. With the assurance of
equipment being supplied by USPHS and endorsement of Surgeon General Cumming, the institute had no
objections to helping Dr. Clark. Understandably, this study wasn’t projected to be as holistic as
Rosenwald’s and Clark decided to focus on males only. The reason behind this chiefly relied on
characteristic syphilitic sore being easily visible on male sex organs, compared to females whose sores
may be present within the vaginal walls [5, 6].

Sample Overview

The years between 1932 and 1973 saw African-American males, suffering from late latent syphilis, being
closely shadowed by the U.S Public Health Service. These male subjects, like those shown in figure 1,
generally belonged to a lower socioeconomic status and resided in the southeastern Macon County of
Alabama [5, 6, 7]. The study initially recruited approximately 600 individuals, with 399 of these being the
so-called test subjects with latent syphilis and the rest regarded as controls [7]. In addition, these men
were inadequately educated and mainly worked as sharecroppers in the rural agricultural sector. The
range of incentives offered to them included hot meals, compensation for funeral preparations (delivered
by Milbank Memorial Fund) and free medical exams [6, 7]. For reasons explained later, the main reason
for their participation was centered on the possibility of voiding themselves with “bad blood” (the local
southern umbrella term signifying a range of conditions like syphilis) [7].

Figure 1:- Pictures taken in 1953, depicting some participants of the study.

Course of TSS, Sampling Procedure and Challenges

The enlisting process began shortly after Dr. Raymond Vonderlehr arrived in Tuskegee (September,
1932) and attempted to find individuals who would fit the criteria set out by USPHS [6, 7]. At the time,
the study was proposed to run for 6-12 months only and instructions to Vonderlehr stated all participants
should be black individuals aged 25-60, who currently suffer from syphilis [7]. However, when
Vonderlehr attempted to call such individuals, they feared that he was conducting a medical check-up for
military drafting purposes. Therefore, he attempted to throw off this perception by testing all those who
turned up at the relevant field centers. It has to be kept in mind here that USPHS had agreed to treat all
those syphilitic patients who were tested but not enrolled in the study (the deal made by Clark with
Alabama health officials) [6]. Consequently, this recruitment process ended up being a costly endeavor
and treatment in the form of mercury oleate rubs/protiodide pills was given out to individuals who didn’t
partake in the study. Quite compellingly, almost 4 months into the study 50 pounds of mercury oleate had
already been consumed for the rubs [6, 7].

As established before, the basic structure of the study involved the researchers carrying out a
Wassermann test for syphilis but only its latent form was concerned in the study. Thus, a baseline of 5
years from the onset of symptoms was set by Clark as a sign of latency. Interestingly, Vonderlehr’s
testing results disputed Clark’s since he only observed an 18-20% incidence rate in Macon County
(compared to 36% suggested by Clark) [6]. The difference, however, can be easily attributed to variations
in the sample population and time lapse between the 2 studies.

Once subjects, positive for latent syphilis, were identified they would undergo a full health check-up and
a lumbar puncture (then known as spinal tap) on subsequent visits [8]. The spinal tap procedure involved
removal of cerebrospinal fluid from the spinal column, and served as a test for neuro-syphilis based on
the amount of white blood cells present. This procedure was particularly uncomfortable for patients,
hence advertised as “special treatment” in all official correspondence (figure 2) to them [7]. In an attempt
to elicit a better response from individuals regarding these subsequent tests, a small dosage of
neoarsphenamine and a mercury-based ointment was then offered to these participants [6, 7].

Figure 2:- An official letter sent to all participants, with spinal tap diagnostic procedure
misrepresented as special treatment for syphilis.

In April 1933, Vonderlehr suggested continuing the study and outlined his proposal in a letter to Clark.
This would be first in a series of letters Vonderlehr would write, all of which detailed his plan for a 5-10
year longitudinal study [6]. His goal entailed the deliverance of supposed treatment, prompting
participants to visit regularly and conductance of autopsies on them to observe the degree of damage.
Vonderlehr then consulted Oliver Clarence Wenger, who emphasized on carrying out these autopsies and
went as far as to claim the participants were useless otherwise [2, 7]. Next, Vonderlehr wrote letters to
Mutton and Dr. Dibble, in an attempt to get them on board and gain Tuskegee Institute’s support for the
treatment of some individuals like before [6, 7].

Such was the extent of deception that USPHS sent a box of 5000 pink-colored aspirin pills in 1934 [7].
These would then be passed onto the participants, disguised as new tablets for the treatment of syphilis.
Things didn’t improve when the reins of the study were transferred to Austin V. Deibert in 1938 as he
attempted to gain more subjects [9, 10]. Deibert was under the impression that black and white males
show strikingly different manifestations of syphilitic symptomatology [6]. In 1941, when 15 control
individuals developed syphilis, Deibert transferred all those who became infected before 1939 to the test
group [6, 9].

The sheer atrocity of the study can be traced from the fact that successive research papers clearly
explained its devastating effect. The first one was published in 1936 and openly cited the presence of
cardiovascular / neurological issues in the sample [7]. Subsequently, another article published in late 1946
revealed the debilitating nature of this disease which was greatly experienced by research patients [9].
This was followed by yet another report in 1948, again explaining the increased morbidity seen in
untreated syphilitic patients [10]. In fact, Wenger actually accepted how the study ideology had
inarguably led to deaths within the sample. This was further supplemented by results from autopsies
conducted in 1955, which successfully showed around 30% of the test subjects had passed away due to
complications of the disease [5]. The overall autopsy numbers, assembled in 1973, have been illustrated
in Figure 3 below [6].

Figure 3:- The number of autopsies conducted in syphilitic and control groups over the course of the
study.

In total, 13 different reports were published from 1936-1972 and for coherence purposes these have been
compiled in Figure 4 [5, 6, 7, 9, 10].
MONTH/YEA REPORT
R

Untreated Syphilis in the male negro: A Comparative Study of Treated and Untreated Cases
Sep 1934 (Published in Journal of American Medical Association)

Untreated Syphilis in the

Feb 1946 Male Negro: Mortality during 12 Years of Observation (Published in Journal of Venereal
Disease Infection)

Dec 1946 Untreated Syphilis in the Male Negro: III. Evidence of Cardiovascular Abnormalities and
Other Forms of Morbidity (Published in Journal of Venereal Disease Infection)

Untreated Syphilis in the Male Negro:

May 1950 Observation of Abnormalities over Sixteen Years (Published in American Journal of
Syphilis, Gonorrhea and Venereal Diseases)

Twenty Years of Follow-Up Experience in a

April 1953 Long-Range Medical Study. (Authored by Nurse Rivers and published in Public Health
Reports)

Untreated Syphilis in the

July 1954 Male Negro: A Prospective Study of the Effect on Life
Expectancy (Published in Public Health Reports)

July 1954 Environmental Factors in the Tuskegee Study of Untreated Syphilis (Published in Public
Health Reports)

Feb 1955 Untreated Syphilis in the Male Negro: Pathologic Findings in Syphilitic and Nonsyphilitic
Patients (Published in Journal of Chronic Diseases)

Nov 1955 Untreated Syphilis in the Male Negro: Background and Current Status of Patients in the
Tuskegee Study (Published in Journal of Chronic Diseases)

May 1956 Untreated Syphilis in the Male Negro: Twenty-two Years of Serological Observation in a
Selected Syphilis Study Group (Published in Journal of American Medical Association)

Untreated Syphilis in the Male Negro: X. Twenty Years of Clinical Observation of

Aug 1956 Untreated Syphilitic and Presumably Nonsyphilitic Groups (Published in Journal of Chronic
Diseases)

Dec 1964 The Tuskegee Study of Untreated Syphilis: The 30th Year of Observation (Published in
Archives of Internal Medicine)

Mar 1973 Aortic Regurgitation in the Tuskegee Study of Untreated Syphilis (Published in Journal of
Chronic Diseases)
Nurse Rivers

Nurse Rivers can be termed as a pivotal character in the study, who essentially acted as a bridge between
the researchers and participants. Eunice Rivers Laurie was born in 1899 and received her nursing degree
from the School of Nursing at Tuskegee Institute [11]. She didn’t come from an affluent background, but
her parents strongly encouraged her to receive a good education and be independent. With respect to her
professional aptitude, Rivers was highly commended for incorporating a good bedside manner in her
interactions with patients.

Before the study had begun, researchers saw the need for a skillful black nurse who would be able to help
with the recruitment and study procedure [6]. Rivers had already been part of the earlier Rosenwald study
and was also working as a night nurse at the John A. Andrew Memorial Hospital before she was
recommended by her colleague Dr. Dibble for the study [6, 11]. She was subsequently hired by Clark and
offered an impressive $150 a month (an increase of $85 from her last job) [5]. During the TSS itself, she
developed a very close bond with the participants, as seen in Figure 5, and they strongly trusted in her
capabilities [12]. Nurse Rivers acted as an advocate for those who took part in the study and their right to
be treated competently, especially in the case of misconduct by white doctors. In fact, her ability to
resonate with the black community can be deemed as one of the reasons why the study sustained its
course and only a handful of participants ended up withdrawing. Sadly, she was responsible for obtaining
consent from victim’s families for autopsies and was told to encourage patients to report back for all the
additional tests.

Considering the aforementioned information, Nurse Rivers’ involvement in the study has been scrutinized
and conflicting explanations have been reported by researchers. One possibility is that she succumbed to
the white authority under control and was at risk of jeopardizing her career if she protested. In contrast,
another justification could be her inability to let go of the stature synonymous with her role in a
government funded large-scale study. After all, in 1953 Rivers did publish a paper on the continuance of
the study in a public health journal [13]. Additionally, she received the Oveta Culp Hobby Award from
Department of Health, Education and Welfare in 1958 for her contribution to the study [5, 6].

In a one-on-one interview, Miss Rivers contradicted these statements by saying the effects were greatly
exaggerated by the media and the men had been receiving better healthcare facilities than they normally
would [14]. Not only this, but she also stated the study carried factual basis and scientific backing in its
logic and implementation. Yet, most of these claims can be refuted by looking at the wealth of evidence
supporting the damage endured by the subjects. In the same interview, she also told how she had despised
working at night at her old job which could be another reason why she ignored the actual objectives of the
study [14].

Nonetheless, all historians agree that Nurse Rivers played a significant part in ensuring the needs of all
those participating were met and the patients had nothing but praises for her work.

Figure 4:- Timeline of all articles published on TSS, with the relevant journal names. These reports
explained how the study progressed and authors were all related to the study in some way.
 Figure 5:- Nurse Rivers (dressed in her usual attire) pictured with a participant (left) and Dr.
Albritton, along with Dr. Edmondson (right).

Disclosure and its Implications

The study finally ended after its existence was disclosed to the general public via prominent newspapers
in 1972. This revelation can be credited to Peter Buxton, who is widely known as the whistleblower of the
case and made his first attempt at revealing the unethical basis of the study in 1966 [6]. He wrote a strong
letter to William J. Brown at DVD (Division of Venereal Disease), explaining how TSS contradicted
fundamental ethical principles. The department, on the other hand, didn’t take his concerns seriously and
study proceeded normally for the next 6 years. Buxton then went ahead and sought the help of Jean
Hiller, who was working as an investigative reporter with Associated Press [5, 6]. The story went public
on June 25th 1972, being published in Washington Star and becoming the headline in New York Times
(figure 6) as well [15].

Figure 6:- New York Times newspaper from July 25th, 1972. TSS made it on its first page as
the news spread across the US.
Almost immediately after this, there was public hue and cry about the unlawful practices employed by the
physicians involved. U.S senator for the state of Massachusetts, Edward Kennedy condemned the study
gravely and ordered a series of congressional hearings as well. At the same time, due to large amount of
public scrutiny, on 28th August 1972 US Department of Health, Education and Welfare (HEW) set up an
Ad Hoc Advisory Panel [5, 6]. This panel focused on determining the purpose of conducting this study,
whether consent had been obtained from the subjects and need for its termination. The panel comprised of
9 members, 5 of whom were black individuals, and reported its findings on April 30 th, 1973 with the
publication titled HEW Final Report [2].

Under the advisement of the aforementioned panel, TSS was officially terminated in November 1972 and
left detrimental consequences in its wake. More than a hundred of those recruited for the study died
owing to issues arising from syphilis. Additionally, these subjects passed on the disease to 40 women
which resulted in the birth of 19 children with congenital syphilis [15]. Eventually, all men who
participated in the study, including the descendants of those who died, ended up suing the US
Government, Alabama state administration, PHS and other bodies involved. Lawyer F.D Gray, who
represented these men in the trial, details how he became involved in his book “The Tuskegee Syphilis
Study: The Real Story and Beyond”. A victim named Charlie Wesley Pollard paid Gray a visit on 27 th
July 1972 and explained how he had been one of the survivors of TSS [16]. Pollard was working as a
farmer in Notasulga (close to Tuskegee) and had been approached by a reporter regarding the study a few
days prior. After a long line of questioning, principally focusing on his embroilment in the study, Gray
agreed to file the class-action lawsuit on his behalf. The original amount mentioned in official lawsuit
documents was $1.8 billion but following out-of-court negotiations with the government on 27 th
November 1974, $10 million was paid to all those named [6]. Consequently, all remaining participants
were paid $37,500 and successors of those ‘test subjects’ who died received approximately $15000 [6,
15].

Interestingly, Tuskegee Institute wasn’t named in the lawsuit and neither were any of the doctors involved
in the study convicted. There were a lot of reasons why the trial didn’t proceed normally and these
concentrate on the lengthy structure of class-action lawsuits. Gray felt his plaintiffs were growing quite
impatient and rightly so, considering the amount of manipulation they already had to endure. Also, he
wasn’t sure if the jury wouldn’t be biased with regards to black males even though a compelling case had
been made against the authorities [6].

Events following TSS

Shortly after the aforesaid settlement, Tuskegee Health Benefit Program was launched in 1974 to provide
all the survivors with free medical care [5]. This was then extended to include the children and spouses of
all those who had passed away due to the study. Simultaneously, Senator Kennedy set the actions in
motion for the eventual production of National Research Act in July 1974 by advocating for a National
Commission for the Protection of Human Subjects of Biomedical and Behavioral Research [5, 6]. This
commission would ultimately construct the Belmont Report, which is credited for creating the 3 cardinal
principles of ethics namely Respect, Beneficence and Justice [6]. Over the next two decades, a plethora of
different research articles were published on the Tuskegee Syphilis Study and attempted to highlight the
flaws in human research. These ideologies were comprehensively discussed in 1994 at a symposium titled
“Doing Bad in the Name of Good?: The Tuskegee Syphilis Study and Its Legacy”. This symposium was
organized at Claude Moore Health Sciences in Virginia (affiliated with University of Virginia) and led to
a detailed talk on research techniques used in TSS [17]. This dialogue resulted in like-minded individuals
realizing how their aims aligned and they ended up formulating the Tuskegee Syphilis Study Legacy
Committee. The committee first met in early 1996 to discuss how the United States Government needed
to be more active in conveying their discontent with the study. Their final report (published in May of the
same year) proposed a federal apology to be delivered by President Bill Clinton [6].

Subsequently, on May 16th 1997 President Bill Clinton organized an official ceremony in the White
House Rose Garden and solemnly apologized for the distress faced by all the victims. His speech
“Remarks in Apology to African-Americans on the Tuskegee Experiment” focused on expressing regret
at the conductance of an ethically-biased study [18]. However, he remarked how the future experiences of
morally sound research are likely to occur owing to this study. In addition to this, he admitted the
wrongdoings of United States Government and the betrayal faced by victims at the hands of US Public
Health Service. During this 15 minute speech, he also announced how the government was planning on
providing Tuskegee Institute funds to launch the later-known Centre for Bioethics in Research and
Healthcare [18]. After the speech, President personally met the 5 survivors in attendance and figure 7
from the ceremony, depicts a survivor named Herman Shaw with the president. President Clinton again
referred to Tuskegee Syphilis Study in his commencement speech 2 days later at Morgan State University
[6].

Figure 7:- Bill Clinton is photographed with a former participant Herman Shaw at the white
house ceremony.

Impact

It wouldn’t be unusual to assume the study would have an impact on the notions held by the black
population regarding research institutions/researchers seeking participation. In fact, the Tuskegee Legacy
Project (Mar 1999- Nov 2000) focused on identifying any disparities amongst Black, White and Hispanic
groups with respect to partaking in a research study [19]. A Tuskegee Legacy Project Questionnaire
(TLPQ) was developed by the relevant researchers and used to identify the degree to which black subjects
would consent to a particular study. Surprisingly, the study reported no major differences between the 3
ethnic groups despite the fact that black population was more well-informed about the existence of TSS.
If anything, the study explained how lack subjects were actually more likely to take part in a research
study. The authors subsequently repeated the study in 2003, by administering a telephonic TLP
Questionnaire and reported analogous findings [20].

Although, it has to be kept in mind that these studies were solely based on self-report methods and they
are likely to be biased in terms of accuracy. The differences can be accredited to intimidation felt by black
individuals, who may have been inadvertently pressured into agreeing with these researchers. The TLP
Questionnaire was again administered in 2009 across 3 different US cities with similar ethnic groups and
the subjects’ knowledge about the study was determined [21]. The results from study showed limited
information about the study in all 3 groups, thus leading to the conclusion that TSS no longer held any
relevance (in terms of participation in biomedical research) for the black community.

A similar study explored how TSS could be linked to the lack of support being sought by the black
population for AIDS/HIV in early 90’s [22]. It outlined how black individuals may show dissatisfaction
with the local public health authorities and participation in AIDS prevention studies was limited as a
result. It was hypothesized that TSS could be responsible for mainstream views amongst African-
Americans that AIDS was a form of government approved genocide against their population [22].

Conclusion

TSS can be described as a revolutionary study, especially in terms of highlighting the need for
transparency and accountability in human research. Unfortunately, TSS researchers deceived all the
participants by withholding essential details like the true aim of the study. They successfully managed to
create a rouse, where they were attempting to find the impact of withholding treatment rather than
administering it. This came as a shock to the world, especially considering how the study wasn’t hidden
and had been reported several times in articles published with reputable journals. It was then linked to
disengagement of black individuals from research opportunities; however, conflicting outcomes have
been reported. Not to mention, the racial discrimination that was brought to light and lead to further
disenfranchisement from black minorities in US. While its adverse implications on these subjects are
widely accepted, it also exposed the gaping loopholes in medical research field. This prompted demand
for proper legislation to safeguard the rights of all those involved in a research study to be treated
impartially. All in all, it can be safely concluded that we are eternally indebted to the Tuskegee Syphilis
Study for modern-day research principles which don’t permit such blatant disregard for sanctity of life.
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