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
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
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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 (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 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 laws actually make such actions criminal offenses as they should be, not just ethical violations. Much positive change has come about since Tuskegee.
American College of Epidemiology. (2014). History & mission. Retrieved from http://acepidemiology.org/content/history-mission
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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
1. Confidentiality 2. Conflict of interest 3. Meta-analysis 4. Privacy 5. Publication bias 6. Risk assessment