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The dangers of difference.

It has been sixty years since the beginning of the Tuskegee syphilis experiment and twenty years since its existence was disclosed to the American public. The social and ethical issues that the experiment poses for medicine, particularly for medicine's relationship with African Americans, are still not broadly understood, appreciated, or even remembered.[1] Yet a significant aspect of the Tuskegee experiment's legacy is that in a racist society that incorporates beliefs about the inherent inferiority of African Americans in contrast with the superior status of whites, any attention to the question of differences that may exist is likely to be pursued in a manner that burdens rather than benefits African Americans.

The Tuskegee experiment, which involved approximately 400 males with late-stage, untreated syphilis and approximately 200 controls free of the disease, is by any measure one of the dark pages in the history of American medicine. In this study of the natural course of untreated syphilis, the participants did not give informed consent. Stunningly, when penicillin was subsequently developed as a treatment for syphilis, measures were taken to keep the diseased participants from receiving it.

Obviously, the experiment provides a basis for the exploration of many ethical and social issues in medicine, including professional ethics,[2] the limitations of informed consent as a means of protecting research subjects, and the motives and methods used to justify the exploitation of persons who live in conditions of severe economic and social disadvantage. At bottom, however, the Tuskegee experiment is different from other incidents of abuse in clinical research because all the participants were black males. The racism that played a central role in this tragedy continues to infect even our current well-intentioned efforts to reverse the decline in health status of African Americans.[3]

Others have written on the scientific attitudes about race and heredity that flourished at the time that the Tuskegee experiment was conceived.[4] There has always been widespread interest in racial differences between blacks and whites, especially differences that related to sexual matters. These perceived differences have often reinforced and justified differential treatment of blacks and whites, and have done so to the detriment of blacks. Not surprisingly, such assumptions about racial differences provided critical justification for the Tuskegee experiment itself.

Before the experiment began a Norwegian investigator had already undertaken a study of untreated syphilis in whites between 1890 and 1910. Although there had also been a follow-up study of these untreated patients from 1925 to 1927, the original study was abandoned when arsenic therapy became available. In light of the availability of therapy a substantial justification for replicating a study of untreated syphilis was required. The argument that provided critical support for the experiment was that the natural course of untreated syphilis in blacks and whites was not the same.[5] Moreover, it was thought that the differences between blacks and whites were not merely biological but that they extended to psychological and social responses to the disease as well. Syphilis, a sexually transmitted disease, was perceived to be rampant among blacks in part because blacks--unlike whites--were not inclined to seek or continue treatment for syphilis.

The Dilemma of Difference

In the context of widespread belief in the racial inferiority of blacks that surrounded the Tuskegee experiment, it should not come as a suprise that the experiment exploited its subjects. Recognizing and taking account of racial differences that have historically been utilized to burden and exploit African Americans poses a dilemma.[6] Even in circumstances where the goal of a scientific study is to benefit a stigmatized group or person, such well-intentioned efforts may nevertheless cause harm. If the racial difference is ignored and all groups or persons are treated similarly, unintended harm may result from the failure to recognize racially correlated factors. Conversely, if differences among groups or persons are recognized and attempts are made to respond to past injustices or special burdens, the effort is likely to reinforce existing negative stereotypes that contributed to the emphasis on racial differences in the first place.

This dilemma about difference is particularly worrisome in medicine. Because medicine is pragmatic, it will recognize racial differences if doing so will promote health goals. As a consequence, potential harms that might result from attention to racial differences tend to be overlooked, minimized, or viewed as problems beyond the purview of medicine.

The question of whether (and how) to take account of racial differences has recently been raised in the context of the current AIDS epidemic. The participation of African Americans in clinical AIDS trials has been disproportionately small in comparison to the numbers of African Americans who have been infected with the Human Immunodeficiency Virus. Because of the possibility that African Americans may respond differently to drugs being developed and tested to combat AIDS,[7] those concerned about the care and treatment of AIDS in the African American community have called for greater participation by African Americans in these trials. Ironically, efforts to address the problem of underrepresentation must cope with the enduring legacy of the Tuskegee experiment--the legacy of suspicion and skepticism toward medicine and its practitioners among African Americans.[8]

In view of the suspicion Tuskegee so justifiably engenders, calls for increased participation by African Americans in clinical trials are worrisome. The question of whether to tolerate racially differentiated AIDS research testing of new or innovative therapies, as well as the question of what norms should govern participation by African Americans in clinical research, needs careful and thoughtful attention. A generic examination of the treatment of racial differences in medicine is beyond the scope of this article. However, I will describe briefly what has occurred since disclosure of the Tuskegee experiment to point out the dangers I find lurking in our current policies.

Inclusion and Exclusion

In part because of public outrage concerning the Tuskegee experiment,[9] comprehensive regulations governing federal research using human subjects were revised and subsequently adopted by most federal agencies.[10] An institutional review board (IRB) must approve clinical research involving human subjects, and IRB approval is made contingent on review of protocols for adequate protection of human subjects in accordance with federal criteria. These criteria require among other things that an IRB ensure that subject selection is "equitable." The regulations further provide that:

[i]n making this assessment the IRB should take into account the purposes of the research and the setting in which the research will be conducted and should be particularly cognizant of the special problems of research involving vulnerable populations, such as women, mentally disabled persons, or economically or educationally disadvantaged persons.[11]

The language of the regulation makes clear that the concern prompting its adoption was the protection of vulnerable groups from exploitation. The obverse problem--that too much protection might promote the exclusion or underrepresentation of vulnerable groups, including African Americans--was not at issue. However, underinclusion can raise as much of a problem of equity as exploitation.[12]

A 1990 General Accounting Office study first documented the extent to which minorities and women were underrepresented in federally funded research. In response, in December 1990 the National Institutes of Health, together with the Alcohol, Drug Abuse and Mental Health Administration, directed that minorities and women be included in study populations,

so that research findings can be of benefit to all persons at risk of the disease, disorder or condition under study; special emphasis should be placed on the need for inclusion of minorities and women in studies of diseases, disorders and condition that disproportionately affect them.[13]

If minorities are not included, a clear and compelling rationale must be submitted.

The new policy clearly attempts to avoid the perils of overprotection, but it raises new concerns. The policy must be clarified and refined if it is to meet the intended goal of ensuring that research findings are of benefit to all. There are at least three reasons for favoring increased representation of African Americans in clinical trials. The first is that there may be biological differences between blacks and whites that might affect the applicability of experimental findings to blacks, but these differences will not be noticed if blacks are not included in sufficient numbers to allow the detection of statistically significant racial differences. The second reason is that race is a reliable index for social conditions such as poor health and nutrition, lack of adequate access to health care, and economic and social disadvantage that might adversely affect potential benefits of new interventions and procedures. If there is indeed a correlation between minority status and these factors, then African Americans and all others with these characteristics will benefit from new information generated by the research. The third reason is that the burdens and benefits of research should be spread across the population regardless of racial or ethnic status.[14] Each of these reasons for urging that representation of minorities be increased has merit. Each of these justifications also raises concern, however, about whether potential benefits will indeed be achieved.

The third justification carries with it the obvious danger that the special needs or problems generated as a result of economic or social conditions associated with minority status may be overlooked and that, as a result, African Americans and other minorities will be further disadvantaged. The other two justifications are problematic and deserve closer examination. They each assume that there are either biological, social, economic, or cultural differences between blacks and whites.

The Way Out of the Dilemma

Understanding how, or indeed whether, race correlates with disease is a very complicated problem. Race itself is a confusing concept with both biological and social connotations. Some doubt whether race has biological significance at all.[15] Even if race is a biological fiction, however, its social significance remains.[16] As Bob Blauner points out, "Race is an essentially political construct, one that translates our tendency to see people in terms of their color or other physical attributes into structures that make it likely that people will act for or against them on such a basis."[17]

In the wake of Tuskegee and, in more recent times, the stigma and discrimination that resulted from screening for sickle cell trait (a genetic condition that occurs with greater frequency among African Americans), researchers have been reluctant to explore associations between race and disease. There is increasing recognition, however, of evidence of heightened resistance or vulnerability to disease along racial lines.[18] Indeed, sickle cell anemia itself substantiates the view that biological differences may exist. Nonetheless, separating myth from reality in determining the cause of disease and poor health status is not easy. Great caution should be exercised in attempting to validate biological differences in susceptibility to disease in light of this society's past experience with biological differences. Moreover, using race as an index for other conditions that might influence health and well-being is also dangerous. Such practices could emphasize social and economic differences that might also lead to stigma and discrimination.

If all the reasons for increasing minority participation in clinical research are flawed, how then can we promote improvement in the health status of African Americans and other minorities through participation in clinical research while simultaneously minimizing the harms that might flow from such participation? Is it possible to work our way out of this dilemma?

An appropriate strategy should have as its starting point the defeasible presumption that blacks and whites are biologically the same with respect to disease and treatment. Presumptions can be overturned of course, and the strategy should recognize the possibility that biological differences in some contexts are possible. But the presumption of equality acknowledges that historically the greatest harm has come from the willingness to impute biological differences rather than the willingness to overlook them. For some, allowing the presumption to be in any way defeasible is troubling. Yet I do not believe that fear should lead us to ignore the possibility of biologically differentiated responses to disease and treatment, especially when the goal is to achieve medical benefit.

It is well to note at this point the caution sounded by Hans Jonas. He wrote, "Of the new experimentation with man, medical is surely the most legitimate; psychological, the most dubious; biological (still to come), the most dangerous."[19] Clearly, priority should be given to exploring the possible social, cultural, and environmental determinants of disease before targeting the study of hypotheses that involve biological differences between blacks and whites. For example, rather than trying to determine whether blacks and whites respond differently to AZT, attention should first be directed to learning whether response to AZT is influenced by social, cultural, or environmental conditions. Only at the point where possible biological differences emerge should hypotheses that explore racial differences be considered.

A finding that blacks and whites are different in some critical aspect need not inevitably lead to increased discrimination or stigma for blacks. If there indeed had been a difference in the effects of untreated syphilis between blacks and whites such information might have been used to promote the health status of blacks. But the Tuskegee experiment stands as a reminder that such favorable outcomes rarely if ever occur. More often, either racist assumptions and stereotypes creep into the study's design, or findings broken down by race become convenient tools to support policies and behavior that further disadvantage those already vulnerable.

References

1. For earlier examples of the use of African Americans as experimental subjects see Todd L. Savitt, "The Use of Blacks for Medical Experimentation and Demonstration in the Old South," Journal of Southern History 48, no. 3 (1982):331-48.

2. David J. Rothman, "Were Tuskegee & Willowbrook 'Studies in Nature'?" Hastings Center Report 12, no. 2 (1982):5-7.

3. For an in-depth examination of the health status of African Americans see Woodrow Jones, Jr., and Mitchell F. Rice, eds. Health Care Issues in Black America: Policies, Problems, and Prospects (New York: Greenwood Press, 1987).

4. See for example Allan M. Brandt, "Racism and Research: The Case of the Tuskegee Syphilis Study," Hastings Center Report 8, no. 6 (1978):21-29; and James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York: Free Press, 1981).

5. Jones, Bad Blood, p. 106.

6. Martha Minow, Making All the Difference: Inclusion, Exclusion, and American Law (Ithaca, N. Y.: Cornell University Press, 1990).

7. Wafaa El-Sadr and Linnea Capps, "The Challenge of Minority Recruitment in Clinical Trials for AIDS," JAMA 267, no. 7 (1992):954-57.

8. See for example Stephen B. Thomas and Sandra Crouse Quinn, "Public Health Then and Now," American Journal of Public Health 81, no. 11 (1991): 1498-1505; Henry C. Chinn, Jr., "Remember Tuskegee," New York Times, 29 May 1992.

9. Tuskegee Syphilis Study Ad Hoc Advisory Panel, Final Report of the Tuskegee Syphilis Study Ad Hoc Advisory Panel (Washington, D.C.: U.S. Department of Health, Education and Welfare, Public Health Service, 1973).

10. Federal Policy for the Protection of Human Subjects; Notices and Rules, Federal Register 56, no. 117 (1991):28002.

11. 45 Code of Federal Regulations Section 46.111 (a) (3).

12. This problem is discussed in the context of research in prisons in Stephen E. Toulmin, "The National Commission on Human Experimentation: Procedures and Outcomes," in Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science and Technology, ed. H. Tristram Engelhardt, Jr. and Arthur L. Caplan (New York: Cambridge University Press, 1987), pp. 602-6.

13. National Institutes of Health and Alcohol, Drug Abuse and Mental Health Administration, "Special Instructions to Applicants Using Form PHS 398 Regarding Implementation of the NIH/ADAMHA Policy concerning Inclusion of Women and Minorities in Clinical Research Study Populations," December 1990.

14. Arthur L. Caplan, "Is There a Duty to Serve as a Subject in Biomedical Research?" IRB: A Review of Human Subjects Research 6, no. 5 (1984):1-5.

15. See J. W. Green, Cultural Awareness in the Human Services (Englewood Cliffs, N.J.: Prentice-Hall, 1982), p. 59; Bob Blauner, "Talking Past Each Other: Black and White Languages of Race," American Prospect 61, no. 10 (1992):55-64.

16. Patricia A. King, "The Past as Prologue: Race, Class, and Gene Discrimination," in Using Ethics and Law as Guides, ed. George J. Annas and Sherman Elias (New York: Oxford University Press, 1992), pp. 94-111.

17. Blauner, "Talking Past Each Other," p. 16. 18. See for example James E. Bowman and Robert F. Murray, Jr., Genetic Variation and Disorders in People of Africa Origin (Baltimore, Md.: Johns Hopkins University Press, 1981); Warren W. Leary, "Uneasy Doctors Add Race-Consciousness to Diagnostic Tools," New York Times, 15 September 1990.

19. Hans Jonas, "Philosophical Reflections on Experimenting with Human Subjects," in Experimentation with Human Subjects, ed. Paul A. Freund (New York: George Braziller, 1970), p. 1. Recent controversy in genetic research makes Jonas's warning particularly timely. See Daniel Goleman, "New Storm Brews on Whether Crime Has Roots in Genes," New York Times, 15 September 1992.
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Title Annotation:Twenty Years After: The Legacy of the Tuskegee Syphilis Study
Author:King, Patricia A.
Publication:The Hastings Center Report
Date:Nov 1, 1992
Words:2802
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Next Article:The Tuskegee legacy: AIDS and the black community.
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