Case Teaching Notes
for
"Bad Blood:" A
Case Study of the Tuskegee Syphilis Project
by A.W. Fourtner, C.R. Fourtner and C.F. Herreid
University at Buffalo, State University of New York
Introduction
This case is a synopsis of events described by James H. Jones in his book Bad Blood: The Tuskegee Syphilis Experiment (all direct quotes in the case study are from this monograph). It was first published in 1981 and later updated in 1993 with the addition of a chapter called "AIDS: Is it genocide?" The book has led to a play, a motion picture, and a PBS Nova special. The Tuskegee study became an instant classic on the ethics of human experimentation once the Kennedy congressional hearings in 1973 occurred.
This case is an example of a "historical" case in the sense that it happened sufficiently long ago that few, if any, of the major participants are still living and there are no more major decisions or actions to be made. The story is largely finished. Further, the social and ethical climate is significantly different today than when the events in the case transpired. Many of the key decisions made back then could not be made today in light of present legal and moral guidelines.
Why do we study such a case? The answer is simple: To understand the evolution in our thinking on issues of science, human experimentation, and race and how they are colored by our culture. In addition, we can emphasize certain long-standing principles of science that have not changed over the century; for example, proper controls are still seen as essential. Also, there are clear parallels in dealing with disease conditions within special segments of the population today (for example, breast cancer, AIDS), which lead to special research projects with political and legal overtones.
Objectives
Blocks of Analysis
Every case has its major points for discussion; these vary with the teacher and audience. In this instance, we have identified three major issues for analysis: the science; the ethics of human experimentation; and the racial question. We choose to start with the least volatile of the issues just as we would in the classroom.
The Science
Basically, was this good science? Questions that illuminate this issue include:
On one side of the argument we have the view that many of the so-called untreated men were in fact treated, and this invalidates all conclusions that might be drawn. Furthermore, one might argue that there was no need to repeat a study on untreated people since the Oslo data were adequate.
Clearly, physicians involved with the project did not agree, for they thought it likely the black population might differ [from the Europeans], especially in their cardiovascular and neurological response to syphilis. Also, we have statements that the blood from these men was used to develop standardized blood tests, that the project served as a training ground for many Public Health Service (PHS) and other medical staff, and that the project led to several scientific publications. The Tuskegee data still serve as the reference for understanding syphilis.
Ethics of Human Experimentation
Our view of human experimentation has changed markedly over the past century.
There are numerous examples of soldiers, prisoners, and citizens who have unwillingly
or unknowingly participated in life-threatening "experiments" (see
for example "The Ethics of Experimentation with Human Subjects," by
B. Barber, in Scientific American 1976). The 1993 revelation that Americans
were unwillingly exposed to potentially harmful doses of nuclear radiation during
tests in the 1940s and 1950s is only the most recent example.
Historically, one might think that development of the Nuremberg Code would have prevented such work. This does not seem to be the case. The notorious Nazi medical experiments, which were brought to light after World War II during the war crimes trials, led to the development of a code of ethics called the Nuremberg Code. This set of 10 principles asserts "the subjects' right to decide whether or not to become research subjects." It defines what physicians may or may not do even with the permission of the subject. An investigator must take all precautions to avoid the remote possiblity of injury, and the degree of risk involved to the subject must be commensurate with the "humanitarian importance of the problem." In spite of the widespread publicity of the Nuremberg trials, there appears to be no suggestion that any of the physicians in the Tuskegee syphilis experiment thought the Nuremberg Code applied to them. Nor, for that matter, has it appeared to have any impact on the development of our own ethical framework in the United States (see The Nazi Doctors and the Nuremberg Code, by G. Annas and M. Groden, Oxford Univ. Press, 1992).
Not until the thalidomide scandal of the 1960s did the U.S. scientific community seriously engage the question of human experimentation. Only in the past few years have we seen universities and the National Institutes of Health establish guidelines for human experimentation.
How much of this checkered past needs to be part of the discussion is up to the instructor, but it might be useful to give students your school's or a local drug company's guidelines on human experimentation or ask them to develop their own principles. Certainly, any discussion on these issues will include the "right" of people to choose whether they will be part of an experiment. Also, there will be questions of whether it is possible to truly inform a person about the consequences of an experiment and whether this knowledge will influence the results of the work itself. Lawsuits have been won on the basis that even if a person signs a release, they cannot be held accountable; they may be acting under coercion or stress and without proper understanding of the work. For example: How much would you accept as adequate compensation in such an experiment: $5, $50, $500, or $5000?
The Racial Issue
This is potentially the most volatile issue in the case.
If terms such as "genocide" can be applied to the AIDS crisis, so
might they be applied to the syphilis epidemic and the Tuskegee study. Here
is a documented case of a government agency withholding medical treatment from
an ethnic minority.
If instructors wished to explore this issue, they would presumably focus on how it is possible to view the same event from different perspectives. There is evidence that the Rosenwald Fund had a long history of helping black Americans and one of its concerns about funding the second phase of the Tuskegee project was that its motives could be misconstrued. Furthermore, there is documented evidence that the prime motive for early work was to see if the progress of syphilis in the black male was similar to the first study done on the European male in Oslo. Also, we have clear cooperation of black physicians, nurses, and administrators of Macon County and the Tuskegee Institute. Yet evidence of this type can be viewed through another lens. The perspective of a person arguing the genocide scenario is captured simply with this question: Would this study have occurred (especially once penicillin was discovered) if it involved white middle-class Americans as subjects? Speculation will not provide certain answers, yet the recent revelation that such citizens have been exposed to life-threatening radiation by our government is worth considering as a model.
Classroom Management
This case is ideally suited for the classical case discussion format used for decades in business schools, although it can easily be adapted for small group cooperative learning teams. It is divided into three parts: the disease, the public health program, and the experiment.
There are many other questions that the discussion could develop by reading the case study. If small groups are used, these questions and others can be divided among them to provide different perspectives on the case. These views would be shared in a general group discussion. However, our remaining comments about teaching will emphasize group discussion techniques.
In writing this case we have kept the account relatively straightforward, eschewing emotion-laden phrases, keeping in mind the science and ethics earlier in the century. It has a documentary feel to it; that is intentional. As a result, we hope to accomplish two things: (1) To keep the reader focused on the science first; and (2) To avoid the easy criticism that comes from second-guessing events that took place over 50 years ago. It helps to dampen the tendency of some individuals to use this case as a platform to deride racism without serious analysis. There is always a risk of polemics when we deal with scientific cases that impinge on the public welfare. These moments are seldom enlightening. Careful preparation on the part of the instructor can help head off such events.
The First Question
The opening question to the class is one of the most critical features of case teaching. It determines the entry point into the case, and if one chooses the wrong question or wrong person to respond, the instructor may have difficulty getting back on track. Your question will depend upon your goals in teaching a particular case. Nonetheless, good opening questions have several characteristics in that they:
Consider three examples of questions for the Tuskegee case:
This question will likely catapult the class squarely into the racial issue. It meets many of the goals of a good opening question, but it will probably not suit the tastes of most scientists as the best entry point into the discussion.
This question launches the class into the ethics of human experimentation and once again meets many of the qualifications of a good opening question, but if the scientific data are of prime concern, the next question may be better.
This question, although less exciting than the previous two, starts the class on an exploration of the scientific issues and facts of the case. Below we have identified some of the questions that might be addressed under each issue.
Suggested Question Outline for In-Class Discussion
The Science
- What kind of disease is syphilis?
- What did we know about the disease in 1930?
- What was the original purpose of the study? Was the goal accomplished?
- How did the goals of the project change over time?
- What was the logic behind the choice of subjects?
- What kinds of data were collected in the project and what conclusions resulted from the work?
- What kind of scientific criticisms of the research can we offer?
Human Experimentation
- What benefits did the men gain from the experiment?
- What evidence do we have that the men were harmed by their participation in the project?
- Was it possible to inform the men about the true goals of the experiment, given their educational status?
- Given that men who participated in this study received health benefits, status, attention and money, could they reasonably be expected to exercise good judgment about their participation in this project?
- Are there circumstances which you could imagine where informed consent would interfere with an experiment?
- Are there any circumstances where the overall good of an experiment to society overrides the harm done to a small group?
The Racial Issue
- What evidence do we have that race might have been a factor in the experiment?
- What motivated the PHS investigators to choose Macon County as one of its study sites?
- What differences were present in the experimental design of the Tuskegee and Oslo studies?
- If the Tuskegee and Oslo studies had shown racial differences, how would that information have been used?
- Is it reasonable to conclude that the administration of the Rosenwald Fund failed to fund the second PHS project because they identified racial bias in the work?
- Is there any way to fund research on special groups in the U.S. population without running the risk of being accused of bias?
- Given that certain segments of the population have special health problems, is there any way not to fund research on these groups without running the risk of being accused of bias?
Chalkboard Work
Practitioners of the case study discussion almost invariably make extensive use of the chalkboard or flip charts. This provides a tangible structure to the discussion. If an instructor does not use the board, he or she is throwing away one of the most important tools in teaching. Discussion has the inherent problem that it often seems aimless. Good board work provides students with a sense that something valuable is being accomplished. When the instructor writes a brief phrase on the board summarizing a student's thoughts, it shows that there is value in this contribution to the discussion. This encourages other students to participate, especially if the instructor is able to use the student's name. For instance, the teacher might comment: "If I understand Kimberly's point correctly, she is arguing that we do not have an adequate control population to make the claim that the men actually suffered in this study. She's arguing that men not in the study probably had much poorer health than either the experimental subjects or the official controls." As this point is summarized, the instructor might note on the board "inadequate control for claim that men suffered in study," perhaps even jotting Kimberly's name or initials next to the writing.
The final board outline is seldom neat and tidy; rather, it has phrases, arrows, circles, and lines connecting ideas from different parts in the discussion. Yet a clear pattern should emerge, leaving students with a sense of "Look what we have accomplished!" To bring order to a discussion as it develops is part of the art of the case method. It not only requires practice, it requires preparation as well. In the current case it is logical to arrange the board around the major issues. For example, if the instructor were to begin the discussion with the science issue, he or she might label it as such on the left side of the board, jotting down notes and phrases as they are developed. When other ideas pop up, the instructor might momentarily move over to other places on the board to write down these ideas only to return to the science issue later. The teacher might set up the center of the board to develop the human experimentation theme, adding notes to other places on the board as they appear appropriate. The instructor might then shift to the right-hand side of the board to develop the racial issue, making connections with previous points, moving back and forth among the issues as neglected points emerge. Thus the board has given structure to the discussion regardless of how freewheeling it might have been.
Closure
How does one finish a class discussion? Some case teachers simply stop when class time runs out. They feel no obligation to give their perspective on the discussion. "Life is messy," they argue. "There are no simple solutions." They would maintain that it is counterproductive to the development of higher-level critical thinking to give an "instructor-biased viewpoint." Other case teachers seriously disagree. Instead they recognize the value of a good two- or three-minute summary of the class's discussion, and some instructors turn to the students themselves for assistance, asking one or two bold souls to wrap it up. A summary, of course, does not imply that you have solved the problems; it merely identifies some of the signposts along the way.
Afterthoughts
(by C. Herreid)
I used this case in a case study workshop in Vancouver in August 2000. A team of three faculty was given this case without teaching notes. They were asked to teach the case to a group of other faculty in order to gain experience in running cases via the discussion method. They had two striking innovations that are worth sharing:
The instructor then asked the rhetorical question, "Why did you feel this way?" Again, she allowed no discussion here, but she had gotten the emotional piece out in the open. After polling everyone, she shifted gears and said, "Perhaps we can better analyze what happened by looking at this timeline."
References