The Tuskegee Syphilis Experiment, Social Change, and the Future of Bioethics

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I. THE TUSKEGEE SYPHILIS EXPERIMENT AS A CONSEQUENCE OF SOCIAL CHANGE AND ILLUSTRATION OF REPEATED, LONG-TERM ETHICAL FAILURE

This article presupposes some familiarity with the notorious Tuskegee Syphilis Experiment. In brief, the United States Public Health Service (PHS), from 1932 to 1972, conducted a study of the effects of untreated syphilis on impoverished, rural, African-American males. (1) It is fascinating--and a cautionary tale --to perceive the experiment itself as an unintended consequence of positive social change and of the work of some reputable "change agents." First, the experiment presumably would never have happened, if not for the work of the Julius Rosenwald Fund in regard to "health care for African-Americans in the rural South." (2) Julius Rosenwald was a "Jewish philanthropist" who can be characterized as a positive change agent through his foundation's assistance for both schools and health care. The Rosenwald Fund assisted the Tuskegee Institute, financed construction for schools for African-Americans--the first of which was built in Macon county, Alabama--and helped to construct hospitals and clinics. The Fund sought to improve race relations and promoted the hiring and training of African-American medical professionals and public health workers. The Rosenwald Fund successfully created an alliance with the PHS. (3) It is noteworthy that the federal and state governments, as well as the Rosenwald Fund, were all active in trying to provide treatment for syphilis and sexually-transmitted disease in the period prior to the Tuskegee experiment. The joint work of the PHS and the Fund in 1930-31 demonstrated very high infection rates and very low treatment rates, in six specified locations in the South, with the highest infection rates in Macon County, Alabama. Just as this significant, unmet need for treatment was revealed, however, the Great Depression limited both governmental and private funding for treatment. The Rosenwald Fund, with its funds diminished by lowered stock values, ended its support of syphilis treatment in 1932, and thus was not involved in the notorious Tuskegee experiment itself. (4) However, one can certainly view the experiments as an unintended consequence of the positive work of the Rosenwald Fund, as the Fund's work and partnering with the PHS opened up a pathway of concern and information about syphilis in the local area. The PHS in launching the experiment was able to build upon the good will and local contacts created by the Fund's work in Macon County. (5)

In its context, the initial decision of the U.S. Federal Health Service to launch the Tuskegee study, while clearly unethical, is more understandable. First, the initial launch was intended as a short study of six to eight months. (6) Second, there was a genuine debate at the time as to whether the forms of treatment than those available, which used heavy metals including arsenic, were more harmful than helpful to patients. Penicillin was not yet available. (7) Third, due to the insistence of Alabama State Health Officer Dr. Baker, treatment was to be provided during the term of the study. While this would provide too short of a course of treatment to be deemed full treatment at the time, it was presumed to be significantly more than the complete lack of treatment that would occur apart from the study. (8) Fourth, initially the study was not designed to examine the ongoing effects of untreated syphilis going forward in time. Instead, the initial intent was to study the effects from untreated syphilis that had already occurred on a population that had suffered high rates of untreated and undiagnosed syphilis prior to the study. (9) Fifth, the study was a result of several intentions: to draw attention to a neglected public health and medical problem in society, by documenting the extent of the harm it produced, and settling issues as to whether there are disparate effects in different racial groups, as prior studies had been done on white Norwegians. …