Ethical Implications from the Tuskegee Study
Dr. Joseph Costa, D.H.Sc., PA-C
Health Policy and Management
MPH 252
Shannon Mikrut
June 2013
Chapter 1
The Tuskegee Syphilis Study
History of the Study
The Tuskegee Study is an infamous study that was carried out by the United States Public Health
Service (PHS) from 1932 to 1972. The forty year study was intended to evaluate the development of syphilis in
African Americans. Syphilis is a sexually transmitted disease caused by a bacterium (Centers for Disease
Control and Prevention [CDC], 2012). Initially, six hundred rural African American men from Tuskegee,
Alabama were enrolled into the study, of which three hundred and ninety nine had syphilis prior to the start of
the study. The study is infamous largely due to the poor ethical treatment of patients and unjust behavior of the
researchers.
In the early 1900s, syphilis was a concern for physicians in the African American community. Doctors
believed that treatment for syphilis and other illnesses was not attainable for African Americans. Things such as
socioeconomic status and education were not taken into consideration when evaluating the state of African
American health (Brandt, 1978). Prior to the start of the Tuskegee Study, Booker T. Washington proposed
economic development for African Americans and gained support for his ideas (CDC, 2011). In 1929, the PHS
began conducting studies in rural communities to record the natural history and prevalence of syphilis in
African American men. The studies were funded under a grant from the Julius Rosenwald Fund (CDC, 2011).
As researchers were studying rural communities in the south, the highest rate of syphilis was found in Macon
County, Alabama. Dr. Taliaferro Clark, the Chief of the PHS Venereal Disease Division felt that Macon County
warranted attention and would provide a great opportunity to monitor syphilis prevalence (Brandt, 1978).
The researchers wanted to study how syphilis affected people’s daily lives and so they began to gain
support for a study in the town of Tuskegee. The researchers had no formal standards for the study and the
Surgeon General, H.S. Cumming was interested in conducting a study on patients with syphilis, but without
providing treatment for them. H.S. Cummings felt that the treatment would do more harm than good. To justify
the lack of providing treatment, the PHS explained that the study subjects would not seek treatment for the
disease during their lives anyways, so it was decided that the study subjects would not be treated (Brandt,
1978).
Study subjects were to be African Americans with syphilis and between the ages of twenty five and
sixty. Each subject received a physical, with x-rays and spinal tap to test for syphilis. As the researchers began
to recruit subjects for the study, they found it was more difficult than they originally anticipated to collect
subjects. In order to make up for the lack of subjects, researchers decided to offer free medical care, meals, and
burial coverage as an incentive to participate in the study (CDC, 2011). Once free care was offered to
participants, many became willing to enroll in the study. According to Brandt (1978), the subjects were not told
they were involved in an experiment and were told they were being treated for “bad blood”. Bad blood was a
term used to generalize a variety of illnesses such as syphilis, fatigue, anemia, etc (CDC, 2011). Unknown to
the subjects, the PHS had no intention of treating the subjects for syphilis. Each subject was however provided
ointment that was not intended to treat the illness (Brandt, 1978). Despite penicillin being the accepted
treatment for syphilis in the late 1940s, subjects were not given the treatment (CDC, 2011). Actually, the PHS
went as far as to make sure that the subjects did not receive treatment for syphilis from other resources (Brandt,
1978).
In 1972, a press story revealed to the public the nature of the inhumane and unethical treatment of the
Tuskegee Study participants. It was upon this realization that it was determined that the study should be
discontinued. A lawsuit was filed on behalf of the study subjects and the families of the participants in 1973.
The lawsuit was settled in 1974 and participants and their families were awarded a lifetime settlement for their
mistreatment (CDC, 2011).
Ethical Issues Involved with the Study
The biggest ethical concerns with the study include that subjects were intentionally lied to, were denied
treatment for their illness, and were lead to believe that they were receiving free medical treatment from
professional doctors for a severe disease. The deception that surrounded the study was unprecedented.
Researchers and the PHS withheld information, withheld proper care, were deceitful and misleading, and did
not obtain the proper consent from participants.
It was ultimately determined by the Department of Health and Human Services (HHS) that the study
was unjustified in 1932 due to the failing of researchers obtaining consent from participants. Beyond that,
researchers left the whole community at risk of further spread of syphilis. This jeopardized the health of many
and left a lasting impression on how African American’s lives and health were disregarded (Brandt, 1978). The
abuse of authority still fosters doubt and mistrust within research studies and the African American community
to this day.
Beneficence is defined by Merriam-Webster (2013) dictionary as doing or producing acts of kindness
and charity. Every subject should be treated in an ethical manner, including the option to participate in the study
and the protection from harm. Researchers and medical professionals involved in the Tuskegee Study did not
enact any form of beneficence on the participants. They did not have the well-being of the participants in mind
and put them at risk of harm. Subjects were unfairly treated, manipulated, and taken advantage of.
In light of the unjust and unethical treatment of participants in the Tuskegee Syphilis Study, the Belmont
Report was established to advise ethical treatment of study subjects. The Belmont Report provides ethical
principles and guidelines for protecting research subjects (HHS, 1979). The basic ethical guidelines include that
subjects should be treated as autonomous agents and persons with diminished autonomy are entitled to
protection. This means that subjects should be able to choose what should or should not happen to them during
the study, along with having the option to drop out at any time. Subjects also are to be protected from any
unnecessary harm and ensured safety (HHS, 1979). Along with mistreatment of participants, researchers also
did not obtain informed consent. Informed consent includes having a full understanding of the study, the
medical facts, risks involved, and voluntaries (HHS, 1996). The Nuremberg Code ensures that study
participants have the legal capacity to give consent and gives the power of choice (HHS, 2005). Humans have
rights and those should be upheld to the greatest standards available. Social values often guide individual
behavior, and conducting research with live subjects should be no different.
Chapter 2
Conclusion
Summary
In summary, the Tuskegee Study was a blot on research studies carried out in the United States. The
study was unethical and inhumane of all of the study subjects involved. Worst of all, this was intentional. The
researchers purposely deceived participants in order for them to enroll in the study. Subjects were lead to
believe that they were receiving free medical care and proper treatment for their illness. Rather, subjects were
being given a fake treatment, lied to, mistreated, and put at greater risk of progressed illness and even death.
The public knowledge of the questionable practices being carried out by the Tuskegee Study researchers
lead to increased standards and guidelines for ethical treatment and rights of study subjects. The Belmont
Report was created to establish the proper ways of allowing autonomy, beneficence, and integrity. The Belmont
Report ensures that subjects are treated fairly, are not subjected to harm, and have the choice to participate.
Recommendations
Upon learning the details of the Tuskegee Study, this author is saddened to read about the unethical and
unjust behaviors of medical professionals and researchers. This author believes that there are several areas of
the study that needed to be changed. First, the researchers should have provided the test subjects with truth
about the study. Without full knowledge and understanding of the study, subjects were not able to make an
informed decision on whether or not to participate in the study. Researchers also should have obtained informed
consent for the patients. This would include providing all of the information about the true nature of the study,
but also informing patients of the right to withdraw from the study at any point. A change in attitude would also
be a change this author recommends. Researchers and medical professionals involved in the study did not have
a plan or study standards. This author would make the change that researchers have an organized and set
proposal for the study. Researchers did not have a formal plan, nor did they have a humane perception of
African Americans. The subjects were not treated like any other human being. They were treated as if their lives
had less value that of Caucasians or other ethnicities. This author also would change that study subjects receive
the proper respect as individuals and treatment to cure syphilis, penicillin. Participants were denied the right to
proper health care and treatment of their illness. This put not only the subjects themselves at risk, but the
communities in which they live at risk of contracting syphilis. Lastly, this author feels that the Belmont Report
and the Nuremberg Code have been overlooked and the justice and beneficence of study subjects disregarded.
This author recommends that the researchers place value on the individual autonomy of all study subjects.
References
Brandt, A.M., (1978). Racism and research: The case of the Tuskegee Syphilis study. The Hastings
Center Report 8(6), 21-29.
Burke, R.E., & Friedman, L.H., (2011). Essentials of management and leadership in public health (1st
ed.). Sudbury, MA: Jones & Bartlett Learning.
Centers for Disease Control and Prevention. (2012). Syphilis- CDC Fact Sheet. Retrieved from:
http://www.cdc.gov/std/syphilis/STDFact-Syphilis.htm
Centers for Disease Control and Prevention. (2011). The Tuskegee timeline. Retrieved from:
www.cdc.gov/tuskegee/timeline.thm
Merriam-Webster. (2013). Beneficent. Retrieved from:
http://www.merriam-webster.com/dictionary/beneficent?show=0&t=1372036324
United States Department of Health & Human Services. (1979). Belmont Report. Retrieved from:
http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html#xapp
United States Department of Health & Human Services. (1996). Informed Consent Requirements
in Emergency Research. Retrieved from: http://www.hhs.gov/ohrp/policy/hsdc97-01.html
United States Department of Health & Human Services. (2005). Nuremberg Code. Retrieved from:
http://www.hhs.gov/ohrp/archive/nurcode.html