The Unethical Tuskegee Syphilis Study
Dr. Joseph Costa, DHSc., PA-C
Health Policy and Management
MPH 525
Tracy Liichow
June 2014
Table of Contents
Chapter
Page
1. Introduction ................................................................................................................................ 3
2. The Tuskegee Syphilis Study..................................................................................................... 5
3. Consent ...................................................................................................................................... 8
4. Summary and Recommendations ............................................................................................ 11
Summary ........................................................................................................................... 11
Recommendations ............................................................................................................. 12
References ..................................................................................................................................... 13
3
Chapter 1
Introduction
The United States Public Health Service (USPHS) has some outstanding
accomplishments. There have also been times of abuse of power and even hubris. The Tuskegee
Syphilis Study is a black-eye on the face of public health. It was an experiment done on
unknowing African American males, who had late stage syphilis over a period of 40 years. They
were not informed participants. They were not given treatment for the disease. “The Tuskegee
study of untreated syphilis in the Negro male is the longest nontherapeutic experiment on human
beings in medical history” (S. B. Thomas & Quinn, 1991, p. 1501).
According to Medical Historian, Allan M. Brandt (1978),
In 1932 the U.S. Public Health Service (USPHS) initiated an experiment in
Macon County, Alabama, to determine the natural course of untreated, latent
syphilis in black males. The test comprised 400 syphilitic men, as well as 200
uninfected men who served as controls. . . .When penicillin became widely
available by the early 1950s as the preferred treatment for syphilis, the men did
not receive therapy. In fact on several occasions, the USPHS actually sought to
prevent treatment. (p. 21)
Initially, the USPHS thought the study would last for only six months and that it would
be basically an inexpensive and simple project (Brandt, 1978). As the history of this experiment
shows the idea that public health and related medical and science fields can possess misguided
values is evident. Public health not only needs a code of ethics, its practitioners should adhere to
it and communicate its existence to the public. American people sometimes wonder and harbor
skepticism about the activities and the general field of public health.
Can public health officials and agencies be trusted? In the African American community
some would believe that public health authorities cannot be trusted. According to Thomas and
Quinn (1991, p. 1499), “The continuing legacy of the Tuskegee Syphilis Study has contributed to
Blacks’ belief that genocide is possible and that public health authorities cannot be trusted.”
4
The directive to ensure and protect the health of the public conveys with it an obligation
to care for the well-being of communities. “The need to exercise power to ensure the health of
populations and, at the same time, to avoid abuses of such power are at the crux of public health
ethics” (J. C. Thomas, Sage, Dillenberg, & Guillory, 2002, p. 1057). Ethics in public health are
essential.
The Tuskegee Syphilis Study legacy of mistrust that exists in the African American
community places the community at high risk for various diseases and chronic infirmities. This
has affected the prevention of HIV within the African American community which has a
profound effect on public HIV prevention efforts. As stated by Gamble (1997, p. 1773), “Fears
that they will be used as guinea pigs like the men in the syphilis study have also led some
African Americans with AIDS to refuse treatment with protease inhibitors.”
Even though it is recognized that public health practitioners have faced ethical challenges
for a very long time, the academic field of public health ethics has emerged and is evolving
(Nixon & Forman, 2008). Nevertheless, sound and comprehensive ethical policies must be
installed into the prevention efforts undertaken in public health. For instance, “Public health
professionals must ensure that HIV testing and counseling are accompanied by specific informed
consent, full discussion of treatment options, and appropriate referrals for primary care and
clinical trials” (Thomas & Quinn, 1991, p. 1504). The value of consistent use of informed
consent, full disclosure of treatment options, and appropriate primary care cannot be overstated.
This paper briefly explores public health ethics and the Tuskegee Syphilis Study, a
recognized symbol of unethical research on human beings. This paper discusses what went
wrong and why the public health authorities along with medical care researchers pursued the
study while knowingly taking advantage of disenfranchised people.
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Chapter 2
The Tuskegee Syphilis Study
Susan M. Reverby (2001, p. 22), author of Examining Tuskegee: The Infamous Syphilis
Study and Its Legacy and professor of history at Wellesley College, emphatically stated the study
affected, “approximately 399 African-American men with the disease and 201 controls, led to a
lawsuit, Senate hearings, a federal investigation, and new rules about informed consent.”
Reverby succinctly described the impact the study had upon American society.
American society has had a historical indifference for the lives of African-Americans
(Dalton, 1989; S. B. Thomas & Quinn, 1991). This indifference produces mistrust.
Unfortunately, Harlon Dalton (1989, pp. 220–221), professor of law at Yale University and a
member of the National Commission on AIDS from 1989 to 1993, believes “the government
purposefully exposed Black men to syphilis so as to study the natural course of the disease.”
This distortion arose out of historical mistrust and continues to live in the midst of current
mistrust and festers.
Why was this experiment initiated and pursued? Chief of USPHS Venereal Disease
Division in 1932, Dr. Taliaferro Clark (1993, p. 91; S. B. Thomas & Quinn, 1991; Brandt, 1978),
explained “the Alabama community offered an unparalleled opportunity for the study of the
effect of untreated syphilis.” Clark intended to ascertain how the disease progressed and
“affected the daily lives of the men” and the intent of the study was to observe the disease until
death (Brandt, 1978, p. 22). This was planned as a study of late stage “untreated syphilis in the
male Negro” and treatment was actually withheld and forbidden (Reverby, 2001, p. 24; Jones,
1993). According to Reverby (2001),
The PHS did many things to keep the men from treatment: tracking them to other
public health departments across the country, intervening with local physicians
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and even the local draft board, perpetuating the falsification that they were being
treated by providing aspirins and vitamins, and lying. (p. 24)
At the time of the Tuskegee Study’s inception every major textbook of syphilis, often
sexually transmitted disease, strongly supported treatment even in latent stages (Brandt, 1978).
Syphilis can be acquired in a congenital manner from an infected mother to fetus, and this
appears not to have been of concern to the researchers. There was a prevailing view that blacks
were highly promiscuous and sexually driven. As Brandt (1978) surmises, there was a belief that
conditions in Tuskegee existed “naturally” because of the inferiority of blacks. Therefore, the
men would not be medical treated under the circumstances. This belief provided the
experiment’s rationale. In other words, the existence of syphilis treatments did not apply to
black people (Brandt, 1978). “The doctors who devised and directed the Tuskegee Study
accepted the mainstream assumptions regarding blacks and venereal disease” (Brandt, 1978, p.
23).
The mostly illiterate and poverty-stricken population of sharecroppers and tenant farmers
was canvassed by the USPHS in search of test subjects (Brandt, 1978). Facts were withheld
from the participants. The participants were uninformed, and they were not given information
about syphilis (S. B. Thomas & Quinn, 1991). If a person is uninformed and ignorant about
diseases, particularly communicable ones, then he or she can easily be manipulated. As stated by
Thomas and Quinn (1991, p. 1501), “The PHS physicians, believing that their patients would not
understand clinical terms, did not even attempt to educate them about syphilis.”
Furthermore, in order to get them to participate they were lied to and told they were being
treated for “bad blood” (Jones, 1993). “They were told they were ill and were promised free
care” (Brandt, 1978, p. 24). According to Reverby (2009, Kindle Location 98), “The only
permission asked for was the right to autopsy their bodies after the men had died in exchange for
7
payment for a decent burial.” In many cases this represented the only burial insurance many of
the men could obtain (Jones, 1993). In addition, there were incentives given by USPHS, which
included free physical examinations, food, and transportation (S. B. Thomas & Quinn, 1991).
The study subjects were medically examined by USPHS physicians and a variety of tests were
performed over the years (Jones, 1993). At the end of the study in 1972 there were 71 survivors
which reflected only 18 percent of the total participants. Reverby (2001, p. 25) states “there is
no reliable information on what happened to the other 328.”
According to James Jones (1993, p. 6), “As the years passed the men came to understand
that they were members of a social club and burial society called ‘Miss Rivers’ Lodge.’” Miss
Rivers was an African American nurse employed by USPHS to act as a bridge between the
health service and the men. Even with the bridge provided by USPHS and other incentives why
did the men participate? It can be surmised that they did not comprehend what the experiment
was about and, therefore, they did not know the dangers they were exposing themselves to
(Jones, 1993).
However, one of the tragedies concerning this experiment was that the project which
“originally intended to meet real health needs ended in a mere attempt to salvage scientific data”
(S. B. Thomas & Quinn, 1991, p. 1501). Good intentions based on misinformation can inflict
harm upon unsuspecting people. People generally have tendency to trust person of authority.
There are valuable lessons to be learned from this infamous study. “Today, as before, the
Tuskegee Study has much to teach us about racism in the United States and the social warrant of
medicine in people’s lives” (Jones, 1993, p. x). Lillie Tyson Head (2012, p. 474), a descendant
of one of the participants in the study, reflects “Research is justifiable, is meaningful, and should
accurately predict what is expected, but only when done ethically.”
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Chapter 3
Consent
The public health manager and the organization or agency he represents should be
sincerely concerned about informed consent, which is an ethical issue (Burke & Friedman,
2011). Public health leadership has to set an example of public health ethics. Public health
managers that promote values that highly esteem respect of persons and liberty are to be
commended.
Giving consent to be used as a subject or participant in a study is giving permission to be
intruded upon. Personal liberty is involved. The view that liberty rights forbid any intervention
unless the individual has agreed to it forms the basis of the legal dimensions of consent in health
services (Burke & Friedman, 2011). The broad scope of the promotion of the population’s
physical well-being includes particular kinds of individual rights, such as study participant rights
and patient rights. According to Teitelbaum and Wilensky (2012, p. 111), “One of the most
important healthcare rights is the right of individual patients to make informed decisions about
the scope and course of their own care.” Three factors are involved for consent to be ethical, the
consent should be voluntary, competently obtain, and informed (Burke & Friedman, 2011).
Public health organizations must assure managerially that they have provided “adequate,
understood, and communicated information as to the services that are to be rendered under their
auspices” (Burke & Friedman, 2011, p. 96). Informed consent incorporates a few significant
aspects. Informed consent encompasses effective communication of information and includes a
discussion of alternatives and risks as well as benefits. “The usual standard is that the
information must be what a reasonable physician would give a reasonable patient” (Burke &
Friedman, 2011, p. 97). Informed consent is an educational endeavor and includes more than
9
just the patient and physician. Public agencies should consider using a team approach to ensure
proper informed consent.
Furthermore, Teitelbaum and Wilensky (2012) describe the Nuremberg Code and the
contemporary ideas involving informed consent in the following manner:
Modern notions of informed consent have their roots in the Nuremberg Code,
which derived from the Nuremberg trials in the late 1940s of German physicians
who performed horrendous experiments on prisoners in Nazi concentration camps
during the Second World War. The code spells out principles of research ethics,
including the need to secure in advance the voluntary consent of the research
subject. These principles have been codified and expanded in American federal
statutory and regulatory law concerning federally funded biomedical research. (p.
111)
The code has beneficence comprised in it. Beneficence means making sure a proposed
study has in mind the best interest of the participants. Contemporary public health applications
of beneficence include a positive duty to the public and acting with charity and kindness (Burke
& Friedman, 2011). In research studies the act of balancing benefits and harms is important and
beneficence should figure prominently (Burke & Friedman, 2011).
Currently regarding research designs and clinical trials there is agreement that the
benefits of participation in an experimental study must outweigh any possible risks to the subject
and include informed consent (Friis & Sellers, 2014). “Generally accepted international
bioethics guidelines state that clinical care and research should be conducted in accordance with
four ethical principles: respect for autonomy, beneficence, nonmaleficence and justice” (Elsayed,
2007, p. 146).
The Tuskegee Syphilis Study was conducted outside of the realm of acceptable ethics.
“In light of the deceptions and exploitations which the experiment perpetrated, it is an
understatement to declare . . . that the experiment was ‘ethically unjustified,’ because it failed to
obtain informed consent from the subjects” (Brandt, 1978, p. 27).
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Waiving consent leads to taking advantage of vulnerable populations as proven by the
Tuskegee Syphilis Study. It would not be recommended ever to waive consent, even though
some researchers have raised the question of waiving consent in some areas of clinical
investigation. This approach leaves room for unethical behavior to occur. One problem to
foresee is an abuse of power like the one that occurred during the Tuskegee Syphilis Study.
It is acknowledged there are circumstances under which waiving informed consent is
acceptable in research, such as when researchers are unable to obtain it and when the studies
involve only minimal risks. “In such circumstances, research participants generally need
protection in other ways, such as through confidentiality safeguards and appropriate review by an
independent research ethics committee” (Friis & Sellers, 2014, p. 717). However, minimal risk
can be interpreted subjectively. Additionally, researchers should do the uttermost to obtain
informed consent. Also, public health studies are required to submit study proposals for
independent ethical review (Friis & Sellers, 2014).
It is beneficial for the field of population health to have a document like the Belmont
Report. The Belmont Report attempts to condense the basic ethical principles identified by The
National Commission for the Protection of Human Subjects of Biomedical and Behavioral
Research (U. S. Department of Health and Human Services, 1979). The Belmont Report
includes respect for autonomy, beneficence, and justice.
Individual autonomy is “the right to be free from interference” (Burke & Friedman, 2011,
p. 91). Nonetheless, society cannot be put at risk because of individual rights (Burke &
Friedman, 2011). There are times of crisis when the health and safety of the community
outweigh individual rights. The study this paper has reviewed does not reflect such a time.
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Chapter 4
Summary and Recommendations
Summary
There have been many great accomplishments in the field of public health over the last
100 years. There have been many lessons learned from the success and failures. This paper has
discussed an example of a failure. The 40 year Syphilis Study started at Tuskegee Institute in
Alabama in 1932 conducted by the USPHS on African American men was unethical.
Furthermore, this study has become legendary and stands as blemish upon public health research.
This failure has contributed to the development of a public health code of ethics. It is
recognized that public health places values on individual informed consent and autonomy.
Public health has striven to embrace the mistakes of the past and put into place a variety of rules
and oversight to ensure that this kind of research experiment never happens again.
The Tuskegee Syphilis Study is an example of research using human subjects who were
not protected. This occurrence was allowed because the subjects were African American. Even
though individual autonomy is highly valued in the United States, African Americans experience
individual rights violations within the arena of population health.
The Tuskegee Syphilis Study subjects trusted the public health officials and these same
officials withheld treatment from them. As already been indicated above the study lasted for 40
years during a time of innovations in medical treatments for syphilis. As a result of the study
mistrust has been bred and still breeds among African Americans. Trust must be earned and
consistent goodwill must be demonstrated to recover from the legacy of the study.
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Lastly, informed consent is a vital part of any public health code of ethics. Informed
consent involves public health leadership, dedication, planning, and education. Beneficence and
autonomy are keys to comprehensive and effective informed consent.
Recommendations
Public health research is foundational in the struggle to conquer infectious diseases that
rampage populations. Therefore, it is essential that public health research continue, yet it must
continue with an ethical basis if it is going to effective and generate trust.
Placing a high value on all human life and dignity is an essential commitment that public
health researcher must possess. Researchers have an obligation to design investigations that take
into accountable a host of variables and to be mindful of beneficence in regards to potential
participants.
Another recommendation would be to not forget what occurred and the legacy that still
affects the African American community. Remember that miscommunication and
misunderstanding can breed mistrust in any community, and especially in a community where
health disparities exist.
The changes to make regarding how the Tuskegee Syphilis Study was conducted are
numerous. The study designed was not well thought out. The duration was too long. The
foundational basis was unstable and did not allow for future advancements in medical research.
Most importantly, the truth should have been told to the participants in the beginning and
throughout the course of the study. There should be been a wholehearted effort to obtain
informed consent and provide full disclosure. Respect of persons should have been
demonstrated especially because the USPHS represents the entire American population.
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References
Brandt, A. M. (1978). Racism and research: the case of the Tuskegee Syphilis Study. Hastings
Center Report, 8(6), 21–29.
Burke, R. E., & Friedman, L. H. (2011). Essentials of management and leadership in public
health. Sudbury, MA: Jones and Bartlett Publishers.
Dalton, H. L. (1989). AIDS in blackface. Daedalus, 205–227.
Elsayed, D. E. M. (2007). Public health and ethics: An overview. Sudanese Journal of Public
Health, 2(3). Retrieved from http://sjph.net.sd/files/vol2i3p146-151.pdf
Friis, R. H., & Sellers, T. A. (2014). Epidemiology for Public Health Practice. Jones & Bartlett
Publishers.
Gamble, V. N. (1997). Under the shadow of Tuskegee: African Americans and health care.
American Journal of Public Health, 87(11), 1773–1778. doi:10.2105/AJPH.87.11.1773
Head, L. T. (2012). One Voice: A Commentary on the Syphilis Study at Tuskegee by a
Descendant’s Daughter. Ethics & Behavior, 22(6), 472–474.
doi:10.1080/10508422.2012.730004
Jones, J. H. (1993). Bad Blood. Simon and Schuster.
Nixon, S., & Forman, L. (2008). Exploring synergies between human rights and public health
ethics: A whole greater than the sum of its parts. BMC International Health and Human
Rights, 8(1), 2.
Reverby, S. M. (2001). More than fact and fiction: Cultural memory and the Tuskegee syphilis
study. Hastings Center Report, 31(5), 22–28.
Reverby, S. M. (2009). Examining Tuskegee: The Infamous Syphilis Study and Its Legacy
(Kindle.). The University of North Carolina Press.
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References (Cont.)
Teitelbaum, J. B., & Wilensky, S. E. (2012). Essentials of Health Policy and Law. Jones &
Bartlett Learning, LLC.
Thomas, J. C., Sage, M., Dillenberg, J., & Guillory, V. J. (2002). A Code of Ethics for Public
Health. American Journal of Public Health, 92(7), 1057–1059.
doi:10.2105/AJPH.92.7.1057
Thomas, S. B., & Quinn, S. C. (1991). The Tuskegee Syphilis Study, 1932 to 1972: implications
for HIV education and AIDS risk education programs in the black community. American
Journal of Public Health, 81(11), 1498–1505. doi:10.2105/AJPH.81.11.1498
U. S. Department of Health and Human Services. (1979, April 18). The Belmont Report.
Retrieved June 22, 2014, from
http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html