Introduction

In the 1930s, 399 African American men living in rural Alabama were recruited by the U.S. Public Health Service to receive free medical care. The men were unwitting participants in a long term study of the effects of untreated syphilis. They were not informed that they had the disease, nor did they receive treatment for it when a cure was discovered during the course of the study. According to the CNN Tuskegee Study Website, "By the time the study was exposed in 1972, 28 men had died of syphilis, 100 others were dead of related complications, at least 40 wives had been infected and 19 children had contracted the disease at birth."

A tragedy of this scope may seem inconceivable to you, but sadly it has parallels in other world events, such as the medical experiments conducted on concentration camp prisoners during the Holocaust. Even today, people draw comparisons between the Tuskegee tragedy and current controversies such as abortion, drug policy, gun control and biomedical experimentation. As a scientist, you should be familiar with the medical atrocities of the 20th century and their legacy, for they have far-reaching implications for the way medicine and medical research is now practiced.

Objectives

This WebQuest will give you the opportunity to

• delve into the facts of the Tuskegee study
• examine the societal factors that allowed it to happen
• think about its consequences, and
• compare and contrast it with other tragic or biomedical issues that have ethical implications.

Resources

To achieve these objectives, you will work in teams to conduct research on a variety of topics related to the Tuskegee study and its legacy. In a few weeks, we will come together as a class so that you can present your findings and we'll discuss as a group how we can learn from the past.

Everybody reads both of these: The web pages below should be read by everyone in the class as general background. On these sites you will find basic factual information about the events that transpired. Keep in mind, though, that every journalist has a viewpoint and that some of these sources may provide contrasting perspectives. It's your job to sift through the information to come to a basic understanding of who was involved and what the sequence of events were. On these pages, you will also find many links to other websites. You can read as much as you want, but remember to save time for conducting specific research on the topic assigned to your group.

• Remembering Tuskegee (National Public Radio)
• Tuskegee study timeline (Center for Disease Control)

Pick one of these three modern bioethical controversies to read about: Choose on of these examples to explore in depth. For whichever example you choose, try to answer the following questions:

• What were the experiments?
• Who conducted the experiments? What was their position in society and what motivated them?
• Who were the subjects of the experiments? What was their position in society and what motivated them?

I've provided some websites you can use as a starting point for your research. Feel free to delve deeper to gain a better understanding of the situation.

Research the specific topic assigned to your group: As part of a team, you will be assigned to research one of the following topics related to the Tuskegee tragedy. For each topic, I have provided a series of questions that you should try to address in your research. The web pages I have suggested are a starting point. Feel free to delve more deeply into the topic by reading other sources. I encourage you to meet or correspond with your group members to share what you have learned. In class, each group will give a brief (no more than 5 minute) and informal presentation to the rest of the class on what it has discovered.

Group 1: Biology

Your group will be charged with answering the following basic questions about the disease syphilis:

• What causes syphilis?
• How is it spread and what are its short term and long term symptoms?
• What was the standard medical treatment for syphilis in the 1930s?
• How has the medical treatment of syphilis changed over time?
• What was the prevalence of syphilis in the 1930s? Were there racial and/or geographic disparities in the incidence of syphilis?
• What is the current-day prevalence of syphilis? Are there racial and/or geographic disparities in the incidence of syphilis today?
• Why is the study of syphilis of medical importance?

Sources to get you started:

• Syphilis Information (Centers for Disease Control)
• Syphilis Fact Sheet (Centers for Disease Control)
• Syphilis Elimination Plan resources (Centers for Disease Control)

Group 2: Social Perspectives, Part 1

Your group will investigate the identities and motivations of the people who conducted the Tuskegee study:

• Who were they?
• What was their position in society?
• What motivated them to conduct the study?
• What possible benefits to humankind did they see in the knowledge to be gained from the study?

Sources to get you started:

• The Faces of Tuskegee (Center for Ethics and Humanities in the Life Sciences at Michigan State University)
• Twenty years of Follow-up Experience in a Long Range Medical Study (Public Health Reports, April 1953)
• Interview with Mary Starke Harper, R.N., Ph.D. (Thinkquest library, 9 July 1997) (Note: The first time you click on this link it may take you to the default Thinkquest Library page rather than the specific article. If so, use the back button on your browser to return here. The second click on the link should open the article.)

Group 3: Social Perspectives, Part 2

Your group will investigate the identities and motivations of the people who were subjects of the Tuskegee study:

• Who were they?
• What was their position in society?
• What motivated them to participate the study?
• What were they told about the purpose of the study and the health consequences of participating in it?

Sources to get you started:

• Twenty years of Follow-up Experience in a Long Range Medical Study (Public Health Reports, April 1953)
• America's Dirty Little Secret (The Association of the Advancement of Blacks in Health Sciences) (*contains graphic images)
• Tuskegee syphilis experiment (from Ronald B. Standler's essay on Nonconsensual Medical Experiments on Human Beings, 1997)

Group 4: Parallels to the Holocaust

Your group will search for parallels to the Tuskegee study in the experiments conducted on Nazi concentration camp prisoners during the Second World War.

• What were the experiments?
• Who conducted the experiments? What was their position in society and what motivated them?
• Who were the subjects of the experiments? What was their position in society and what motivated them?

Sources to get you started:

• Medical Experiments of the Holocaust and Nazi Medicine (Remember.org Cybrary of the Holocaust)
• Nazi Correspondance regarding Medical Experiments (Teacher's Guide to the Holocaust)
• War Crimes Indictment (Holocaust Memorial Museum)(*contains graphic images)

Group 5: The Aftermath

Your group will examine the events that occurred after Associated Press reporter Jean Heller's 1972 article brought the Tuskegee syphilis study to the attention of the American public.

• What happened following the publication of Jean Heller's article?
• What were the two major recommendations of the Final Report of the Tuskegee Syphilis Study Legacy Committee?
• How has the Tuskegee study affected the way the medical community is perceived?

Sources to get you started:

• The Troubling Legacy of the Tuskegee Syphilis Study (University of Virginia Health Sciences Library)
• Final Report of the Tuskegee Syphilis Study Legacy Committee (Tuskegee University National Center for Bioethics, 20 May 1996)
• The Presidential Apology (Centers for Disease Control, 16 May 1997)
• Close-up: Tuskegee experiment's legacy is the spread of suspicion (Los Angeles Times, reprinted by Tuskegee University National Center for Bioethics, 16 May 1997)

Group 6: The Legacy

Your group will investigate how the Tuskegee study and similar atrocities have changed the way biomedical research is conducted.

• What are the main precautions that should be taken in studies that involve human subjects?
• What is informed consent?
• Why were these precautions only adopted after the Tuskegee study was made public?

Sources to get you started:

• The Nuremburg Code (1947)
• World Medical Association Declaration of Helsinki (adopted 1946 and periodically amended)
• Steps Still Being Taken To Undo Damage of "America's Nuremberg" (Annals of Internal Medicine, 15 August 1997)

Acknowledgments