The Dangers of Difference

Abstract

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. …