First Person:

Tuskegee study: Human
tragedy, American style

The HBO film Miss Evers' Boys should be prescribed moral medicine for all Americans. Based on David Feldshuh's 1989 play of the same name, Miss Evers' Boys is a fictional narrative based on the true story of The Tuskegee Study of Untreated Syphilis in the Negro Male (1932-72), the longest nontherapeutic experiment on human beings in the history of medicine and public health.

This 40 year experiment stands as a complex example of moral failure. In the guise of offering treatment, U.S. Public Health Service researchers and their colleagues-both African American and white-withheld from the 412 participants the information that they had syphilis. They were simply told they had "bad blood"-a term that had various meanings to African Americans in 1930s rural Alabama. Nor were the participants informed of the course of the disease. Told they were being treated for this malady, in fact the "treatment" the men received amounted to placebos. Long after penicillin was established as a safe and effective cure for syphilis in 1947, the men in the experiment were systematically kept from receiving it. To ensure that their bodies would be available for final autopsies, the men were guaranteed provision for caskets in which to be buried.

All these men suffered. Many of them died from their untreated syphilis. All were Americans of African descent.

In the African American community, the Tuskegee study has become a metaphor for the misuse of biomedical research and the violation of human rights. Yet, as Miss Evers' Boys powerfully illustrates, some of those responsible for the day-to-day, year-to-year conduct of the research brought to it courage, compassion and deeply-divided consciences.

From a panel response to the film, which premiered Feb. 17 at Emory, it is clear that Miss Evers' Boys moves viewers powerfully. It touches historical wounds, making it necessary to talk about very difficult issues: racism and our deep mutual suspicions; sexually transmitted diseases; paternalism and power in medical care and research; issues of class and economic disparity; and the ethical ambiguity of professional roles.

In an anguished and instructive ethics forum that followed the premiere, we witnessed the full range of responses. The forum began with a panel including current and former government officials, an historian, ethicist, public health advocate and journalist. The audience included medical and public health professionals as well as citizens and professionals from many fields. The discussion was painful, emotional and instructive. Here are a few of the things we learned from our exchanges. We hope it helps other Americans who may view and wrestle with this film.

First, before rushing to make apologies or say how and why this sort of thing could never happen again, it is important to claim and own our emotions. Everyone's. The full range-the shock, anger, disgust, sadness and shame.

Second, we found that the film itself can be discussed from many angles-its historical accuracy, its artistic merit, its point of view, its public impact, its treatment of class and power, its ethical lessons. Let these discussions run. All of them are important.

As our discussion unfolded and the insights mounted, we drew two further learnings. People want to know and to talk about what has already been done in response to Tuskegee and what more needs to be done. They want to draw parallels to Nuremberg and to understand why the Civil Rights movement of the '50s and '60s largely ignored this publicly known study. They want to understand the National Research Act of 1974, which firmly establishes rules of informed consent, sets guidelines for the ethical use of human subjects, and requires that research institutions have ethics committees and institutional review boards for research proposals. They want to make shared sense of why African Americans today widely believe that the men in the Tuskegee study were intentionally infected with syphilis.

Erosion of trust became a central theme of the evening. Researchers and public health workers fear a further eroding of the too-fragile bond of trust between the scientific-medical and African American communities. "I'm afraid this film will set our work back 10 years!" exclaimed one leader in HIV-AIDS treatment. Clearly, institutional review boards need greater community participation, especially from minority groups. Research and clinical trials need greater minority participation from their inception. Public health programs for the treatment and prevention of disease are seriously underfunded.

The fictionalized character Miss Evers is based in part on Nurse Eunice Rivers, who served throughout most of the Tuskegee study. In her we see the deep conflicts of a caring nurse-who was indispensable to the research project because of the trust she engendered in the research subjects-between her loyalty to the authority of the physicians she worked with and her own growing realization that she had become a principal agent in moral outrage. She embodies the conflicts many of us must feel when what is required of us as human beings conflicts with what is required of us by our roles. Such conflicts are the stuff of tragedy, from Abraham to Nixon, from Antigone to Edelman. Many times we try to make contradictions disappear. We deny the conflict or take the easy way out.

Repression of our moral contradictions sets us on the road to self deception. The power of this story is its sensitive exploration of the interplay of deception and self deception, of science degenerating into exploitation, of the separation of the men in the study from being viewed as human brothers that allowed researchers to dispassionately document the ravaging of their bodies. Miss Evers never fully repressed these contradictions. To watch her suffer these conflicts is to feel human tragedy. We hope this film, like all great art, can inspire a large audience with its lessons.

James Fowler is director and Steve Olson is program director for professional ethics,
in the Center for Ethics in Public Policy and the Professions.

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