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When evil intrudes.

Twenty years ago Peter Buxtun, a public health official working for the United States Public Health Service, complained to a reporter for the Associated Press that he was deeply concerned about the morality of an ongoing study being sponsored by the Public Health Service--a study compiling information about the course and effects of syphilis in human beings based upon medical examinations of poor black men in Macon County, Alabama. The men, or more accurately, those still living, had been coming in for annual examinations for forty years. They were not receiving standard therapy for syphilis. In late July of 1972 the Washington Star and the New York Times ran front-page stories based on Buxtun's concerns about what has been called the longest running "nontherapeutic experiment" on human beings in medical history and "the most notorious case of prolonged and knowing violation of subject's rights"--the Tuskegee study.[1]

Buxtun went public with his ethical concerns after years of complaining to officials from the Centers for Disease Control and the Public Health Service with no apparent effect. His decision to blow the whistle led to a series of sensational congressional hearings chaired by Senator Edward Kennedy in February and March of 1973. Legislators and federal officials expressed outrage over the immorality of a study in which poor, illiterate men had been deceived and given placebo treatment rather than standard therapy so that more could be learned about syphilis. Americans found it hard to believe that the Public Health Service had intentionally and systematically duped men with a disease as serious as syphilis--contagious, disabling, and life-threatening--for more than forty years.

The level of outrage about the Tuskegee study was enormous. One CDC official labeled the experiment akin to "genocide."[2] As a result of public anger over the immorality of the study, Congress created an ad hoc blue ribbon panel to review both the Tuskegee study and the adequacy of existing protections for subjects in all federally sponsored research. Even though the panel did not receive all the information about the study that the government had available,[3] they were still concerned enough about what had taken place to recommend the creation of a national board with the resources to reexamine all aspects of human experimentation in the United States. Congress, in 1974, created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research which, in its seventeen reports and numerous appendix volumes, laid the foundation for the ethical requirements that govern the conduct of research on human subjects in the United States to this day.

Syphilis continues to challenge America's and the world's medical, public health, and moral resources. While there are a variety of antibiotics available to treat the disease, it has proven to be a stubborn and resilient foe. The Centers for Disease Control has found steady and alarming increases in the incidence of primary and secondary syphilis over the past decade. It is still a major public health problem in the United States today, especially among young black males.

The rise in the incidence of the disease has ensured that writings about the diagnosis, management, and treatment of syphilis are prominently featured in the professional literature of public health and biomedicine as well as in standard textbooks about venereal and infectious diseases. Ongoing concern about syphilis has led physicians and public health officials to draw upon as much information as they can about the course of the disease. One of the bitter if generally unacknowledged ironies of the Tuskegee study is that, while it now occupies a special place of shame in the annals of human experimentation, its findings are still widely cited by the contemporary biomedical community.

In looking at instances of scientific misconduct and moral malfeasance with respect to research it is quite common to find the position advanced that good science is incompatible with bad ethics. When one wrestles with the horror of the medical abuse of vulnerable human beings it is somewhat comforting to believe that those who engage in such abuse could not produce anything of real value to medicine. Yet the continuing invocation of the findings of the Tuskegee study by those who diagnose, study, or treat syphilis shows that it is sometimes impossible to avoid a confrontation with the question of the ethics of relying on knowledge obtained in the course of immoral research.

The "bad ethics, therefore bad science" argument actually has two distinct components. One part of the argument holds that researchers engaged in obvious immoral conduct with their subjects could not generate useful or valid scientific findings. The second part holds that when the ethical conduct of research is egregiously immoral then any findings obtained ought not to be admitted into the body of scientific knowledge. While it may often be true that it is difficult to trust findings obtained using subjects who were abused or harmed (as was the case in Nazi concentration camp studies),[4] this part of the argument is not always true. Even a cursory glance through the literature of health care reveals that the Tuskegee study was and remains a key source of information about the diagnosis, signs, symptoms, and course of syphilis. No effort has been made to impugn its findings, and the biomedical community has relied upon them for decades.

James Jones, in his landmark book on the Tuskegee study, Bad Blood, notes that no researcher involved in the study ever published a single, comprehensive summary of its findings. The absence of such a review paper may have fostered the impression that no substantive findings of any real significance were obtained. But Jones also notes in the appendix to his book that Public Health Service scientists, physicians, and nurses associated with the study published a total of thirteen articles between 1936 and 1973 based solely upon its findings. These papers appeared in a wide variety of peer-reviewed journals, including Public Health Reports, Milbank Fund Memorial Quarterly, Journal of Chronic Diseases, and Archives of Internal Medicine.

It is a relatively simple matter to establish the importance assigned to the findings of the Tuskegee study by the contemporary biomedical community. The computerization on large data bases of the majority of the world's professional biomedical journals allows searches to be conducted to see which, if any, recent journal articles cite any of the thirteen papers presenting the findings of the Tuskegee study. An initial database search for the period January 1985 to February 1991 produced twenty such citations from a wide spectrum of journals, including American, British, and German publications. The twenty citations make reference to seven of the original thirteen papers.

A visit to any large medical library will also quickly reveal the importance assigned to the findings of the Tuskegee study in recent years. An informal random selection of twenty medical textbooks on sexually transmitted diseases, infectious disease, human sexuality, and public health published after 1984 turned up four books that made explicit reference to the study and cited at least one of the same thirteen articles. Three textbooks were published in the United States, one in England.

The range of journals in which contemporary articles on syphilis, venereal disease, and dementia directly cite the papers reporting the findings of the Tuskegee study is quite large. Direct citations of the Tuskegee study papers appear in articles in the Journal of Family Practice (1986), The Lancet (1986), British Heart Journal (1987), New England Journal of Medicine (1987), Journal of the American Geriatrics Society (1989), The American Journal of Medicine (1989), American Journal of Public Health (1989), and Medical Clinics of North America (1990), among others.

Nearly all the references in both the periodical literature and the medical textbooks use the Tuskegee study to describe the natural history of the disease. A recent review article on cardiovascular syphilis is typical of the way in which the Tuskegee study and its findings are cited:

In 1932, the United States Public Health Service initiated the Tuskegee Study to delineate further the natural history of untreated syphilis. A total of 412 men with untreated syphilis and 204 uninfected matched controls were followed prospectively. Vonderlehr (15), reviewing the autopsy material from the first years of the study, noted that only one-fourth of the untreated patients were without evidence of any form of tertiary syphilis after 15 years of infection. Moreover, cardiovascular involvement was the most frequently detected abnormality. Peters (16) analyzed the autopsy data from the first 20 years of the study. He found that 50% of patients who had been infected for 10 years had demonstrable cardiovascular involvement. Of the 40% of syphilitic patients who died during this period, the primary causes of death were cardiovascular or central nervous system syphilis (16). Of the 41% of survivors at 30 years of follow-up, 12% had clinical evidence of late, predominantly cardiovascular syphilis (17). Most of these patients had evidence of cardiovascular syphilis at the 15-year analysis (17). These data ... indicate that ... complications are usually evident 10 to 20 years after primary infection, and cardiovascular syphilis is the predominant cause of demise in those patients who die as a direct result of syphilis.[5]

The reference numbers 15, 16, and 17 in the excerpt are to three of the thirteen papers reporting the findings of the Tuskegee study.

Yet another representative example from the contemporary periodical literature of health care invoking the findings of the Tuskegee study appears in a review of neurosyphilis and dementia:

Neurosyphilis is rare as a manifestation of syphilis. Tertiary and late latent syphilis have been decreasing in incidence since the 1950s. There have been two studies of untreated syphilis: in the Oslo study neurosyphilis eventually developed in 7% of the patients, and in the Tuskegee study, syphilitic involvement of the cardiovascular system or the central nervous system was the primary cause of death in 30% of the infected patients, with cardiovascular involvement being much more common than neurosyphilis.[6]

Textbook references are quite similar to those that appear in the periodical literature. In giving an overview of the natural course of untreated syphilis one recent text states:

A prospective study involving 431 black men with seropositive latent syphilis of 3 or more years' duration was undertaken in 1932 (the Tuskegee study, 1932-1962) (16). This study showed that hypertension in syphilitic black men 25-50 years of age was 17 percent more common than in nonsyphilitics. Cardiovascular complications including hypertension were more common than neurologic complications were, and both were increased over control populations. Anatomic evidence of aortitis was found to be 25-35 percent more common in autopsied syphilitics, while evidence of central nervous system syphilis was found in 4 percent of the patients.[7]

Reference number 16 is to one of the thirteen papers in which the Tuskegee findings were presented.

These examples clearly illustrate the continuing importance assigned to the Tuskegee study by those concerned with understanding and treating syphilis. The case for the study's importance could be further bolstered by tracking down secondary and teritary references to its findings. There can be no disputing the fact that contemporary medicine has accepted the findings as valid and continues to rely on them as a key source of knowledge about the natural history of the disease.

The acceptance of the Tuskegee study findings as valid refutes the argument that bad ethics is always incompatible with valid science, but the question still remains as to whether the data of the Tuskegee study should continue to be utilized. It may make sense in some situations to argue that data obtained by immoral means should not be used purely on ethical grounds. But even if it were wrong to cite data acquired by immoral means there is simply no way to purge the knowledge gained in the Tuskegee study from biomedicine. Too much of what is known about the natural history of syphilis is based upon the study, and that knowledge has become so deeply embedded that it could not be removed.

Still, the view that the study was immoral and therefore worthless has flourished. This is a cause for concern, because the belief that not much of value came from the Tuskegee study allows both medicine and bioethics to avoid examining such troubling questions as how immoral research could be conducted by reputable scientists under the sponsorship of the American government for forty years, how such research could be allowed to continue long after the promulgation of the Nuremberg and Helsinki Codes, and what the moral duties and responsibilities are of those in biomedicine who continue to cite the study's findings today.

While one of the textbooks that discusses the Tuskegee study does make reference to the ethical shadow hanging over the findings,[8] none of the others and none of the articles in the peer-reviewed periodical literature that directly cite the papers based on the study do so. Should the results of the Tuskegee study continue to be invoked in review articles and texts without some accompanying discussion of the manner in which the findings were obtained and the ethical impact that the study had on the subsequent responsibilities of researchers? Given that the study played a crucial role in causing Americans to rethink the ethics of human experimentation, it would seem morally incumbent upon those who discuss its findings in the context of textbooks and review articles to allot some space for a discussion of the ethical problems associated with it.

There are obvious limits to the extent to which anyone writing a scientific paper or book can review the circumstances and conditions under which scientific knowledge was obtained. The history of medicine is replete with examples of research, certainly considered immoral by contemporary standards, that generate findings still widely accepted and cited. Not every article in a scientific journal can be used as a vehicle for educating the reader about the morality of human experimentation.

But there are obvious forums in biomedicine, such as textbooks and review articles, where it makes sense for authors to include some discussion of the ethical circumstances surrounding morally dubious or blatantly immoral research. The obvious immorality of research methods should not blind us to the importance of noting and discussing them. If no place is made for discussions of the morality of studies such as Tuskegee, the research community may become complacement about the importance of its responsibilities toward human subject at the same time as the public comes to believe that good science cannot emerge from immoral research.

References

1. Stephen B. Thomas and Sandra C. Quinn, "The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community," American Journal of Public Health 81, no.11 (1991):1489-1505, at 1501; Ruth Faden and Tom Beauchamp, A History and Theory of Informed Consent (New York: Oxford, 1986), p. 165.

2. James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York: Free Press, 1981), p. 207.

3. Jay Katz, personal communication, 1991.

4. See Arthur Caplan, ed., When Medicine Went Mad (New York: Humanana, 1992).

5. J. D. Jackson and J. D. Radolf, "Cardiovascular Syphilis," The American Journal of Medicine 87 (October 1989):428-29.

6. J. A. Rhymes, C. Woodson, R. Sparage-Sachs, and C. K. Cassel, "Nonmedical Complications of Diagnostic Workup for Dementia: University of Chicago Grand Rounds," Journal of the American Geriatrics Society 37, no. 12 (1989):1157-64, at 1160.

7. G. L. Mandell, R. G. Douglas, Jr., and J. E. Bennett, eds., Principles and Practice of Infectious Diseases, 3rd ed. (New York: Churchill Livingstone, 1990), p. 1797.

8. K. K. Holmes, P. Mardh, P. F. Sparling, and P. J. Wiesner, Sexually Transmitted Diseases, 2nd ed. (New York: McGraw-Hill, 1990).
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Title Annotation:Twenty Years After: The Legacy of the Tuskegee Syphilis Study
Author:Caplan, Arthur L.
Publication:The Hastings Center Report
Date:Nov 1, 1992
Words:2606
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