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From Introduction: More Than a Metaphor
An Overview of the Scholarship of the Study
Susan M. Reverby

For more than a quarter century now, the images conjured up by the words "Tuskegee Syphilis Study" or "bad blood" have haunted our cultural landscape. Sometimes their form is highly visible to the entire country: when the study first made national news in 1972, when President Clinton offered a formal apology twenty-five years later, or when Laurence Fishburne and Alfre Woodward starred in a fictionalized television movie of the story the same year. Other times the specter becomes more faint: kept alive by memory in the African American community, in queries that circulate over the world wide web and radio talk shows, or in courses taught by historians, sociologists, or bioethicists. But whether we read James H. Jones's book, Bad Blood, or recoil from the fears that chill us as we vaguely recall the details, the story of the Tuskegee Syphilis Study seemingly needs to be told, and told, and told.(1)

Each telling holds onto different aspects of the story. On the surface, the "facts" of the study seem clear enough. As Jones writes:

In late July of 1972, Jean Heller of the Associated Press broke the story: for forty years the United States Public Health Service (PHS) had been conducting a study of the effects of untreated syphilis on black men in Macon County, Alabama, in and around the county seat of Tuskegee. The Tuskegee Study, as the experiment had come to be called, involved a substantial number of men: 399 who had syphilis and an additional 201 who were free of the disease chosen to serve as controls. All the syphilitic men were in the late stage of the disease when the study began.(2)

Set up by the PHS after a Rosenwald Foundation pilot project on rural syphilis diagnosis and treatment, the ostensible purpose was to study "untreated syphilis in the male Negro." The plan was to compare it to a retrospective, not prospective, study of white men and women done in Oslo, Norway, earlier in the century when little treatment was available. Following the outrage generated by the press reports of the study in 1972, there were Senate hearings on human experimentation, federal and state investigative reports, and a $1.8 billion lawsuit filed on behalf of the survivors and their families by civil rights attorney Fred Gray that was settled for $10 million. None of the physician-researchers who ran the study were ever prosecuted. Institutional review boards (IRBs) that must examine most protocols that involve human subjects before research studies begin now exist, in part, because of the revulsion against what happened in Tuskegee. And in 1997, twenty-five years after the story of the study was exposed, President Bill Clinton finally tendered the government's apology to the remaining eight survivors, their families, and the nation's African American citizens, while promising funds for a bioethics center at Tuskegee University.(4)

There have been, of course, numerous American medical research horror stories--live hepatitis virus given to retarded children at Willowbrook, the use of servicemen to test LSD, the civilians exposed to radiation experiments at the height of the Cold War, and other misuses of groups of vulnerable subjects.(5) In this context, the Tuskegee Study could be seen as just one of many violations of basic moral codes when science goes "bad."(6) But in medical research, especially before the end of World War II, researchers often checked with the "best men" in the field before they proceeded (as the physicians in the Tuskegee Study did).(7) They were not required to do the kind of informed consent we expect now. However, as historian Martin Pernick has argued, even before a patients' rights perspective developed around informed consent there was a sense of the importance of "truth-telling and consent-seeking" in medical practice in the nineteenth and early twentieth centuries.(8) But in the context of the PHS system, where hierarchies and an officers' corps based on a military model of chain of command existed, it is not surprising that the researchers at work in Tuskegee thought what they were doing was right. Support, after all, came from the United States' surgeon general, the top "commander" for the PHS.

In a sense, the Tuskegee Study has to be seen as the doing of research, at least in the beginning, in a normal mode. And when race enters the story, and the long-standing history of the use of African Americans as research "bodies" or cadavers is understood, then the study becomes less "bad" science than what became "normative" for research in this country.(9) The problem is less what happens when science goes "bad," but what happens when it is supposed to be "good."(10) The nature of medical research, and its moral fault lines, cannot be separated from a racialized belief system. As literary critic Michael Awkward noted, with no small irony since Booker T. Washington was Tuskegee Institute's founder, "it should be clear that Washingtonian notions of a strategic separateness [between whites and blacks] are no longer tenable, if they ever were."(11)

It is not surprising that a historical experience, containing the elements of a sexually transmitted disease, African Americans, coercion and lying by government officials, violation of trust between health-care providers and patients, and fear of experimentation, wrapped into a forty-year narrative with multiple media replays, would capture our analytic focus and reach into our cultural unconscious. Playing out with all the drama of a southern gothic tale, the story of the Tuskegee Syphilis Study holds our imaginations in thrall in ways that other medical research disasters do not. It almost would have to. As scholars GeneviŠve Fabre and Robert O'Meally have argued, by quoting author Richard Wright's midcentury comment, "`the Negro [sic] is America's metaphor.'"(12)

In turn, the Tuskegee Study is America's metaphor for racism in medical research. It is often paired with the Nazi doctors' experiments on Holocaust victims that were detailed at the war trials at Nuremberg. Both serve as reminders of what medicine aligned with state power can do to those defined as "other."(13) But this most powerful metaphor of racism cannot contain all the various ways the narratives about the study come to be told, as the documents in this collection demonstrate. Ultimately our attempts to create a Manichean story in literally white and black terms explains too little, leaving us without the necessary elements to attempt a more complete effort at understanding. Tuskegee's Truths is a contribution toward creating this understanding by compiling examples of the ways scholars and others have used various kinds of facts and analytic approaches about the study.

To begin, we have to examine the historically specific ways race as a social category has been both created and creates differing kinds of medical assumptions and practices. Accepted paradigms about the existence of an assumed essential "black" body, with difference embodied in muscle, sinews, and disease potential, continues to, in historian Evelynn M. Hammonds's words, "mak[e] race real . . . [by defining] a visible economy of difference."(14) In the syphilis study case, assumptions about African Americans' supposed special sexuality and susceptibility to cardiovascular damage from syphilis underlay much of the Tuskegee research, as Jones has argued. In addition, given the 1930s debate on syphilis treatment, race was used to fill in the lacunae in medical uncertainty.(15)

Racism, medical arrogance, and state power may help us to see how the study started, but it not enough to explain how it continued. The existence of class, sexuality, and gender in a racialized medical setting needs to be explored as well.(16) Without these elements in our analytic frame, we cannot fully appreciate the dilemmas for the African American health professionals who agreed to keep the study going. An analysis of class and gender within the black community is essential to see why Tuskegee Institute officials agreed to the study and how they related to the men brought in as "subjects." The history of the politics of both accommodation and resistance at Tuskegee Institute is required to explain the relationships among the federal officials, local state public-health doctors, and Tuskegee's staff.

Thus the study deserves a more complex reading, a probing below the surface of an ugly and painful story of entangled violations of a moral contract between human beings. In telling these versions of the story, many of the authors whose work is represented in this volume reach for other metaphors. Some of these suggest a moral absolutism that should cover every case of medical research for all times and cultures. Others understand the historical context that would shape moral beliefs, while trying not to fall into moral relativism that excuses inexcusable behaviors. Thus for some scholars, the study is a metaphor for what happens when there is no informed consent, when medical paternalism and arrogance substitute for a consciousness about research "materials" as human beings. Other writers, focused on the black professionals, remind us that in the context of the social and race reality of Alabama, a moral high ground could not be found because of the ever-present danger of lynching and violence.(17) Some authors choose to highlight the study as a story of government power and medical bureaucracies let loose on those unable to defend themselves. Still others emphasize the stories about the difference between North and South, urban and rural, federal and state and local medical power, the compromises enforced by the necessity to gain white philanthropic support to gain black educational and political power.(18) Some even see nothing wrong with what was done.

Thus as the story of the study gets told in form after form, the multiple narratives keep changing, taking on additional or differing cultural burdens. All the documents and articles in this volume demonstrate that metaphors are more than tools of academic discourse: they shape both understanding and human survival.

For the historian, the differing ways the story of the study gets told, the various facts that get marshaled to make a particular argument, and the elements that get left out are not about false memory or necessarily bad history making. Rather, in examining what does get remembered and analyzed, we can learn about what is historically important to differing authors at specific moments in time. As oral historian Alessandro Portelli has written: "The wrong tales allow us to recognize the interests of the tellers and the dreams and desires beneath them. . . . errors, inventions and myths lead us through beyond facts to their meanings."(19) In this spirit, the many selections in this book demonstrate not only the wide variety of ways to understand the study, but also the different meanings people can make of it.

What we "read" into this study depends, too, in part not only on what the authors write but also the questions we bring to it, the knowledge and beliefs we hold. For some in the African American community, Tuskegee is about the disasters and possible conspiracies that have been lurking, and continue to lurk, behind the ostensibly benign faces of physicians. For many African American health-care researchers, Tuskegee is a sobering reminder of the dangers of co-optation and the price extracted in the name of a seemingly larger good.(20) For some nurses, the study proves one nurse's comment that "in many double-blind studies, the only one who is really blinded is the nurse."(21) Others see the dilemma as allowing for both victimization and villainy.(22) For David Feldshuh, the physician-playwright author of the fictionalized Miss Evers' Boys, there are the fears of what he might be doing as a physician now. As Feldshuh remarked: "Here's this reprehensible study that very caring people partook in that made me wonder what guidelines would you follow. . . . If our intentions are good, how are we to be certain that we're not engaged in something that will in the future prove to be morally reprehensible or at least morally questionable?"(23)

And for those who believe in the god of science, there is the question of what happens when its feet are sullied. The late Robert Cassell, the former medical director for the Bridgeport, Connecticut, public health department, wrote: "The goal of human experimentation must always be to advance the human condition, and to improve the lot of the subjects of the study. These are the sine qua non of valid medical research. . . . When I read about Tuskegee . . . I, filled with faith in the religion of good and honest investigation that we call science, was emotionally overwhelmed."(24)

Robert Cassell was right. Sometimes thinking about the study, as with work on slavery or the Holocaust or the atomic bombing of Japan, does become overwhelming. It is possible to become very angry, or to imagine that this could not have happened, or to easily just shake our heads and click our tongues over what "they" did. When President Clinton offered the federal government's apology in 1997 to the survivors, the news coverage similarly emphasized the emotionality of the event. It was almost as if only in an emotional context could the pain of racial injustice and scientific arrogance become real or discussed. The horror and perfidiousness of the study could seemingly only be communicated to a television audience in the familiar daytime format of confession and repentance. But such reliance on emotion, while critical and cathartic, will only be a temporary fix if it does not become the basis for real commitment to a rethinking of research procedures, racial injustices, ethical precepts, and the categories this introduction has suggested.(25)

Tuskegee's Truths is offered in hopes that readers will not settle for this simple emotional path, but will take the time to consider what we can learn from multiple ways of telling and understanding the story. James H. Jones's Bad Blood remains to date the major accounting of the study, piecing together the history from the thousands of pages of primary documents, his interviews with many of the research scientists and the survivors, and a good deal of historical acumen. Published at first in 1981, Jones's interpretation of the study provides us with a narrative that begins with a preliminary probing of racialized medical beliefs and their consequences for the study's so-called subjects. It traces out the unfolding of the study, the various turning points in its convoluted history, and the decisions and rationalizations that provided the frame for its continuation. Jones's book is a masterful touchstone used by many of the authors represented in this volume as their source for understanding and facts.

But we need not fear complicating still further our understanding of the study, or looking at it differently. The Tuskegee Study, just as with other great injustices in our history, needs to be confronted head-on, to be read in as sophisticated a way possible so that we can both understand what happened and consider what will be necessary for prevention of a contemporary repeat. In writing about modern disasters, sociologist Kai Erikson calls them "a new species of trouble" because they are, in part, made through human hands and because whole communities find it difficult to heal. When this kind of "collective trauma" happens, Erikson notes, "`our memory repeats to us what we haven't yet come to terms with, what still haunts us.'"(26)

The story of the Tuskegee Study is a form of collective trauma because it was caused by human hands, it affected an entire community, and it continues to haunt us. Knowing about it and trying to learn its truths will never erase this trauma or lessen its impact. Knowledge, and even apology, are never enough. But in survivor Herman Shaw's words from the presidential apology ceremony in 1997: "The damage done by the Tuskegee Study is much deeper than the wounds any of us may have suffered. It speaks to our faith in government and the ability of medical science to serve us as a force for good. [But] . . . in my opinion, it is never too late to work to restore faith and trust."(27)

Notes

2. Ibid., p. 1. I am grateful to Jim Jones for laying the extensive investigative, historical, and analytic groundwork on the study that makes it possible for me to raise other questions. There is some disagreement, however, in various papers about the exact number of men involved.

3. Some physicians, administrators, and nurses at Tuskegee Institute, at the Tuskegee Veterans Administration Hospital, and in the local medical community knew that the men were in a study for untreated syphilis (see ibid.). But this was not common knowledge in the community until 1982, see Charles G. Gomillion to Susan M. Reverby, 12 October 1994, in this volume.

4. See Susan M. Reverby, "History of an Apology: From Tuskegee to the White House," Research Nurse 3 (July/August 1997): 1-9.

5. See Jay Katz, Experimentation with Human Beings (New York: Russell Sage Foundation, 1972); David Rothman, Strangers at the Bedside (New York: Basic Books, 1991); and John Fletcher, "A Case Study in Historical Relativism," in this volume.

6. One of the key issues that concerned the federal Ad Hoc Committee on the Tuskegee Study was whether or not it violated understandings of informed consent and research morality in its time. For more on this concern, see selections from the report; Allan M. Brandt, "Racism and Research: The Case of the Tuskegee Syphilis Experiment"; and John Fletcher, "A Case Study," in this volume.

7. See Harry Marks, The Progress of Experiment: Science and Therapeutic Reform in the United States, 1900-1990 (New York: Cambridge University Press, 1997); Susan E. Lederer, Subjected to Science: Human Experimentation in America before the Second World War (Baltimore: Johns Hopkins University Press, 1995); and Martin Pernick, "The Patient's Role in Medical Decision-Making: A Social History of Informed Consent in Medical Therapy," in Making Health Care Decisions: The Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship, vol. 3 in Appendices Studies on the Foundations of Informed Consent (Washington, D.C.: GPO, 1982), pp. 1-35.

8. Pernick, "Patient's Role in Medical Decision-Making."

9. See Evelynn M. Hammonds, "The Logic of Difference: A History of <'Race' in Science and Medicine in the United States, 1900-1950" (book proposal, 1997), pp. 5-6. See also Todd Savitt, "The Use of Blacks for Medical Experimentation and Demonstration in the Old South," Journal of Southern History 48 (August 1982): 331-48; Susan E. Lederer, "The Tuskegee Syphilis Study in the Context of American Medical Research," in this volume; and Robert L. Blakely and Judith M. Harrington, eds., Bones in the Basement: Postmortem Racism in Nineteenth-Century Medical Training (Washington, D.C.: Smithsonian Institution Press, 1977).

10. Beginning in the early 1970s, feminist critiques of science and medicine made clear that the problems existed not just when science was done "badly," but also when it was done "well." The differentiation between "good" and "bad" science was taught to me by Professor Diana Long, now at the University of Southern Maine.

11. Michael Awkward, Negotiating Difference: Race, Gender and the Politics of Positionality (Chicago: University of Chicago Press, 1995), p. 15.

12. Richard Wright, White Man, Listen! (New York: Doubleday, 1957), p. 109, quoted in introduction to History and Memory in African-American Culture, eds. GeneviŠve Fabre and Robert O'Meally (New York: Oxford University Press, 1994), p. 4.

13. See, for example, Ernest D. Prentice, "Nuremberg and Tuskegee: Defining Events in Research Ethics" (paper presented at "Pressure Points in Human Subject Research: University of Rochester Conference on Research Ethics," Rochester, New York, 6 August 1998).

14. Hammonds, "Logic of Difference."

15. See Barbara Rosenkrantz, "Non-Random Events," in this volume, and Susan M. Reverby, "No Treatment, No Treatment, No Treatment: The Tuskegee Syphilis Study" (paper presented at the American Public Health Association Annual Meeting, Washington, D.C., November 1994).

16. For the limitations on historical understandings of the metalanguage of race, see Evelyn Brooks Higginbotham, "African-American Women's History and the Metalanguage of Race," Signs 17 (Winter 1992): 251-74. As Higginbotham states: "Today, the metalanguage of race continues to bequeath its problematic legacy. While its discursive construction of reality into two opposing camps--blacks versus whites or Afrocentric versus Eurocentric standpoints--provides the basis for resistance against extrernal forces of black subordination, it tends to forestall resolution of problems of gender, class and sexual orientation internal to black communities" (p. 272).

Similarly, James H. Jones makes this much more personal when he notes, in thanking Nurse Eunice Rivers Laurie for helping him understand the study: "More than any other principal of the Tuskegee Study, she increased my tolerance for ambiguity." Jones, Bad Blood (1981 ed.), p. xi.

Much recent black feminist work has focused on what Kimberl‚ Crenshaw calls "intersectionality," or what Valerie Smith labels the "reciprocally constitutive categories of experience and analysis" that intertwine the "ideologies of race, gender . . . class and sexuality." See Crenshaw, "Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics," The University of Chicago Legal Forum (1989): 139-67, quoted in Valerie Smith, not just race, not just gender: Black Feminist Readings (New York: Routledge, 1998), pp. xiii-xiv.

I am grateful to Evelynn M. Hammonds for her suggestions for sources.

17. See Susan M. Reverby, "Testifying on Tuskegee: The Metalanguage of Race and the Stories of the Tuskegee Syphilis Study" (unpublished manuscript).

18. I am grateful for Susan E. Bell's suggestions on this list.

19. Alessandro Portelli, "The Death of Luigi Trastulli," in The Death of Luigi Trastulli and Other Stories (Albany: State University of New York Press, 1991), p. 2.

20. "Tuskegee: Could It Happen Again?" (panel discussion at the annual meeting of the Applied Research Ethics National Association [ARENA], Boston, Mass., 7 December 1997).

21. Comments made to Susan M. Reverby at Framingham State University Nursing School, Framingham, Mass., March 1993.

22. See the section in this volume on Nurse Rivers.

23. Susan M. Reverby interview with David Feldshuh, Ithaca, N.Y., 5 June 1992.

24. Robert T. Cassell, "Public Health, Then and Now. The Tuskegee Syphilis Study, 1932-1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community" (unpublished paper, 1996). I am grateful to Dr. Cassell for his discussions with me of Tuskegee's impact on a physician-researcher trained in the 1940s, and for this paper that both he and his daughter Wendy made available to me.

25. See Reverby, "History of an Apology"; and Gamble, "Under the Shadow of Tuskegee," in this volume.

26. Kai Erikson, A New Species of Trouble: The Human Experience of Modern Disasters (New York: W. W. Norton, 1994), p. 228; see also Kai Erikson, Everything in Its Path (New York: Simon and Schuster, 1976). I am grateful to Susan E. Bell for suggesting these references and this framework.

27. Herman Shaw quoted at the White House apology, reprinted in this volume.