HCM 3304, Principles of Epidemiology 1 Course Learning Outcomes for Unit VIII Upon completion of this unit, students should be able to: 11. Describe the importance of epidemiology for local, state, national, and international health policy- making. 11.1 Explain the role of epidemiology in disease prevention, and contrast two possible strategies for such preventive efforts. 11.2 Describe risk assessment and discuss the role of epidemiology in such assessments. 11.3 Discuss how epidemiology can shape public policy through the courts. 11.4 Explain the role of meta-analysis as a tool for summarizing epidemiologic evidence and creating public policy. 12. Articulate the key ethical issues which are associated with epidemiology and the use of epidemiological data today. 12.1 Consider how privacy and confidentiality of health records are protected in epidemiological studies. 12.2 Describe the scientific and ethical implications of classifying race and ethnicity in epidemiologic studies. Reading Assignment Chapter 19: Epidemiology and Public Policy Chapter 20: Ethical and Professional Issues in Epidemiology Unit Lesson Crossing the Ethical Line in Epidemiology – The Tuskegee Experiment Certainly one of the world’s leading professional organizations in community health is the American College of Epidemiology (ACE). Founded in 1979, ACE is involved in formal education of epidemiologists, continuing education conferences, setting of professional standards, and also establishing ethical guidelines for practice. That last piece is where we will focus in the Unit VIII lecture. This is so important because the opportunity exists for epidemiologists to step over the ethical line while trying to prove their point about a particular cause of disease, a particular natural history of disease, or a particular form of treatment (ACE, 2014). Conflict - Research and Ethics Perhaps you have by now heard of the Tuskegee Experiment, an example of truly horrible research ethics that will hopefully be remembered for a long time, and which will hopefully cause modern medical researchers to think twice about how they treat the subjects in their studies. What really happened? UNIT VIII STUDY GUIDE The Epidemiology Profession HCM 3304, Principles of Epidemiology 2 UNIT x STUDY GUIDE Title The United States Public Health Service designed and performed a study of syphilis beginning in 1932 and ending in 1972. The study included 600 black men, and 399 of them were positive for late stage syphilis. Participants in this study were promised free medical care, and were told that they were being treated for "bad blood." These poor and uneducated subjects were evaluated to learn about the effects of syphilis on black people. At the time, medical professionals held a theory that white people were affected neurologically by syphilis, whereas, black people suffered only cardiovascular effects ...

1. HCM 3304, Principles of Epidemiology 1
Course Learning Outcomes for Unit VIII
Upon completion of this unit, students should be able to:
11. Describe the importance of epidemiology for local, state,
national, and international health policy-
making.
11.1 Explain the role of epidemiology in disease prevention,
and contrast two possible strategies for
such preventive efforts.
11.2 Describe risk assessment and discuss the role of
epidemiology in such assessments.
11.3 Discuss how epidemiology can shape public policy through
the courts.
11.4 Explain the role of meta-analysis as a tool for summarizing
epidemiologic evidence and
creating public policy.
12. Articulate the key ethical issues which are associated with
epidemiology and the use of
epidemiological data today.
12.1 Consider how privacy and confidentiality of health records
are protected in epidemiological

2. studies.
12.2 Describe the scientific and ethical implications of
classifying race and ethnicity in epidemiologic
studies.
Reading Assignment
Chapter 19:
Epidemiology and Public Policy
Chapter 20:
Ethical and Professional Issues in Epidemiology
Unit Lesson
Crossing the Ethical Line in Epidemiology – The Tuskegee
Experiment
Certainly one of the world’s leading professional organizations
in community health is the American College of
Epidemiology (ACE). Founded in 1979, ACE is involved in
formal education of epidemiologists, continuing
education conferences, setting of professional standards, and
also establishing ethical guidelines for practice.
That last piece is where we will focus in the Unit VIII lecture.
This is so important because the opportunity
exists for epidemiologists to step over the ethical line while
trying to prove their point about a particular cause
of disease, a particular natural history of disease, or a particular
form of treatment (ACE, 2014).

3. Conflict - Research and Ethics
Perhaps you have by now heard of the Tuskegee Experiment, an
example of truly horrible research ethics
that will hopefully be remembered for a long time, and which
will hopefully cause modern medical researchers
to think twice about how they treat the subjects in their studies.
What really happened?
UNIT VIII STUDY GUIDE
The Epidemiology Profession
HCM 3304, Principles of Epidemiology 2
UNIT x STUDY GUIDE
Title
The United States Public Health Service designed and
performed a study of syphilis beginning in 1932 and
ending in 1972. The study included 600 black men, and 399 of
them were positive for late stage syphilis.
Participants in this study were promised free medical care, and
were told that they were being treated for "bad
blood." These poor and uneducated subjects were evaluated to
learn about the effects of syphilis on black
people. At the time, medical professionals held a theory that
white people were affected neurologically by
syphilis, whereas, black people suffered only cardiovascular

4. effects (Elliott, 2009).
Ethical Boundaries Crossed
Many ethical boundaries were crossed in this study. First,
participants were never even informed that they
were part of a study at all. They simply believed that they were
receiving free medical care. The truth is that
doctors “treating” them, if it can be called that, were only
interested in their autopsy findings. Physicians in
charge of the study allowed the men to die of late stage syphilis
so they could obtain more information on the
disease process and the organ damage causes. The end stage
results of syphilis are horrible…insanity,
blindness, heart failure, paralysis, respiratory failure, and other
terrible outcomes. Doctors in the study did not
even inform subjects that this disease was serious and
potentially fatal for them.
Violating Ethics and Laws
The Tuskegee Study went on for so long that it persisted in
violating ethics and also violated new laws that
were passed as it continued over the decades. The Henderson
Act, passed in 1943, required the testing and
treatment of sexually transmitted diseases, and the World
Health Organization's Declaration of Helsinki,
passed in 1964, required medical professionals to provide
informed consent for all medical experiments.
However, the doctors leading the Tuskegee Experiment
continued to withhold information from the
participants and even deliberately misinformed them, preventing
them from seeking alternative methods of
treatment that perhaps could have saved their lives. A bizarre
twist…the US Surgeon General even sent
these men certificates of appreciation after 25 years of

5. involvement in the research (Elliott, 2009).
Penicillin but Still no Treatment
Penicillin arrived on the medical scene in the United States in
1940, and it became the treatment of choice for
syphilis. It was effective. However, demonstrating perhaps the
most appalling ethics even in this horrific study,
doctors withheld the new antibiotic from their study patients. It
would have saved at least some of their lives.
Other Victims of Tuskegee
Not just the study participants were harmed in the Tuskegee
Experiment, the doctors involved did nothing to
educate participants on how syphilis was spread, and as a result
40 wives were infected and 19 children were
born positive for syphilis. Even in the 21st Century, many black
Americans express that they continue to feel
they are targets of medical experimentation, receiving
substandard medical care. This belief is based at least
in part on the Tuskegee Experiment, so today’s black Americans
are victims of Tuskegee also (Elliott, 2009).
Conclusion
In the America of today, it is hard to conceive that the horrible
ethics of the Tuskegee Experiment could ever
be repeated, but we must all fight to be sure of that. We must
make certain that nothing like Tuskegee ever
happens again. The American College of Epidemiology has
presented very clear guidelines for ethical
research in community health, and you will learn about those as
you continue your studies here. Additionally,
today we have many new laws in place that will help to prevent
such abusive actions by researchers. These

6. laws actually make such actions criminal offenses as they
should be, not just ethical violations. Much positive
change has come about since Tuskegee.
References
American College of Epidemiology. (2014). History & mission.
Retrieved from
http://acepidemiology.org/content/history-mission
HCM 3304, Principles of Epidemiology 3
UNIT x STUDY GUIDE
Title
Elliott, R. L. (2009). Ethics and public health. Retrieved from
medicine.mercer.edu/mu-
medicine/ethics/ethicstopics/public/upload/Ethics-and-Public-
Health-February-2009.ppt
Key Terms
1. Confidentiality

7. 2. Conflict of interest
3. Meta-analysis
4. Privacy
5. Publication bias
6. Risk assessment