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Edited by S M Reverby. University of North Carolina Press, 2000, £52.50 (hc), £19.95 (sc), pp 630. ISBN 0-8078-4852-2
No one interested in the ethics of biomedical research will have failed to hear about the Tuskegee syphilis study, or, to give it its full title, the US Public Health Service's Tuskegee Study of Untreated Syphilis in the Negro Male. This study, conducted from 1932 to 1972, on black (African American) males in Tuskegee, Alabama, has, with complete justification, become the paradigm of moral depravity in the field of biomedical research. Virtually every rule of good, ethical research was broken during this “research” over a period of 40 years, down to denying participants even the knowledge, let alone the option, of a remedy when it became available.
In recent years, the Tuskegee syphilis study has received renewed public attention, for two reasons. First, in 1996, 24 years after the cessation of the study, President Clinton provided a formal federal apology, saying to the survivors that “[w]e can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry”. With this apology, Clinton not only accepted moral responsibility—something not easily done by governments in the affairs of state, domestic or foreign—but also contributed to addressing African Americans' distrust of health care and biomedical research, a distrust fuelled by the legacy of Tuskegee.
Second, echoes of Tuskegee have been heard in the ongoing debate about the ethics of biomedical research financed or conducted in the developing world by government agencies and companies from the developed world, particularly in regard to HIV/AIDS. Such research raises ethical questions, relating to key issues such as exploitation and justice, informed consent, and duties of beneficence. David J Rothman puts the underlying concern as follows: “Until the 1990s American medical researchers performed most of their experiments on other Americans—frequently choosing subjects who were poor and vulnerable. Now, however, they are increasingly likely to conduct their investigations in third world countries on subjects who are even poorer and more vulnerable”.1 HIV/AIDS and escaping the possibility of financial and regulatory burdens are cited as reasons for this shift. The ethics of Tuskegee has been internationalised.
For this reason, but also for several others, Susan M Reverby's edited volume, Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study, is a welcome, and indeed magisterial, addition to the Tuskegee literature. In a volume of 630 pages, the editor has put together a resource containing virtually everything one would wish to know about the Tuskegee study—information, transcripts of historical documents, reflections, moral lessons. In a single volume one gets a panorama, as well as detailed mapping, of this sorry saga in US biomedical ethics.
The book begins with an Overview (part I) and Contemporary background (part II). This is followed by an extensive section, Documenting the issues (part III), which includes material such as the testimony by four survivors from the United States Senate hearings on human experimentation, in 1973. Part IV focuses on The Question of treatment, while part V is an Historical reconsideration. The much debated role played by nurse Rivers is rethought in part VI. The Legacy of Tuskegee is considered in part VII, while Key actors rethink the study in part VIII. Part IX, Imagining the Tuskegee syphilis study, moves into the realm of fiction and poetry, with, among others, selections from the play, Miss Evers' Boys. The final part, part X, Apology and beyond, contains such significant recent documents as President Clinton's apology speech and Marcia Angell's 1997 editorial in the New England Journal of Medicine.
I strongly recommend this important volume for anyone interested in the ethics of biomedical research. By rethinking the past we may understand the dangers inherent in such research. From the perspective of the developing world, we need to be armed with the knowledge to help us prevent history from repeating itself, at least in this respect.