The Search for the Legacy of the USPHS Syphilis Study at Tuskegee. Lexington 2011

The Search for the Legacy of the USPHS Syphilis Study at Tuskegee. Lexington 2011. Ralph V Katz and Rueben C Warren, eds.

This is an important book. Not because it sheds new factual light upon the notorious 40-year study that the Federal government sponsored to learn about the effects of untreated syphilis on the human body. A number of important new facts about the atrocious study are set forth by the writers of the 14 essays in the book and the editors. The importance of the volume lies elsewhere. This is a book about a relatively unexamined aspect of the most famous violation of research subjects in American history-what is the legacy of the Tuskegee Study?

Many specific events have followed in the wake of the revelation in 1972 of the USPHS Syphilis Study at Tuskegee. A lawsuit, a number of academic articles and books, films, newspaper reports, conferences, documentaries and an award winning play-Miss Evers' Boys. There have also been an advisory committee to assess what responses might be appropriate, an apology by Lewis Sullivan M.D., then HHS secretary, at a conference in Minneapolis in 1991, a Presidential apology at the White House by Bill Clinton in 1997 and the creation with Federal funds of a Center for Bioethics in Research and Health Care at Tuskegee University in Alabama in 1999.

This is part of the legacy that the contributors evaluate. The role of the media and the arts get little attention although arguably they are the vehicles through which the legacy of Tuskegee has been transmitted to most people. Clinton's Presidential apology draws a lot more. Braithwaite, Griffin, De La Rosa, and Earl, Jr. all concur in their essays that the apology, late as it was, meant a great deal to all Americans. The fate of the bioethics program at Tuskegee, which was part of the Presidential apology, gets less praise-financial struggles and relative indifference from the mainstream bioethics community have long been a part of the legacy with which that department has had to contend.

Other parts of the legacy loom even larger in the book. It has been an article of faith that knowledge of the study cast a pall over the willingness of subsequent generations of African Americans to participate in clinical research- faith that Vivian Pinn reasserts in her essay but that Ralph V Katz convincingly challenges in a series of empirical studies summarized in the book.

It is also an article of faith that the field of bioethics arose as a reaction to the Tuskegee study although it must be noted that the field really emerged in the early 1980s fueled as much by worries over the use of new technologies as well as the growing cost of health care as by attention to the USPHS Syphilis Study at Tuskegee. Ironically, concerns over research ethics violations regarding informed consent and exploiting the poor fueled more attention among bioethicists to ways to draw subjects, including women and minorities, into clinical research. Few bioethicists were interested in responding to the concerns of some very early bioethicists, such as Hans Jonas, challenging the moral legitimacy of the entire clinical research enterprise.

Bioethics certainly did try to grapple with the legacy of Tuskegee by building a better infrastructure for the conduct of clinical research. What seems evident, however, as one reads the various essays in the volume, is that the protections that were built did not attend directly and openly to the major factor that permitted the USPHS Syphilis Study at Tuskegee to be undertaken-racism.

The ethical infrastructure for research ethics which evolved post the outing in 1972 of the USPHS Syphilis Study at Tuskegee consisted of bolstering informed consent and insuring ethical peer review of research. The later relies on local committees which in the USA are referred to as institutional review boards or IRBs to assess risk and benefit, the readability of consent forms, the soundness of the protocol and to insure all options are disclosed to prospective subjects. These are helpful protections for those capable of using them. What is not so clear is whether those Americans who are viewed through racist lenses can truly be benefitted by either tougher consent requirements or peer review by boards made up overwhelmingly of upper and middle class, highly educated white male scientists and doctors?

All manner of events followed once the USPHS Syphilis Study at Tuskegee became widely known. The effort to diminish the evil of racism at the time was a key part of why the Study became widely known and why those in power felt any obligation to do anything about it.

Still, the real legacy of the USPHS Syphilis Study at Tuskegee is how hard it remains to admit to and respond to racism both in biomedical research and in American society in general. Many want to believe that the election of a minority President shows that racism is no longer a driving factor in American public life. The reality is that even liberal white Americans working in the tolerant environments of academia find it hard to see much less respond to the presence of racially grounded views of subjects when it comes to biomedical and social research. The legacy of the USPHS Syphilis Study at Tuskegee is that racism fueled the study, shaped the response that evolved and continues to frame how we think about research ethics in the USA and increasingly in other parts of the world as more and more clinical research is outsourced to the poor in developing nations. More attention to racism in teaching and educating those involved in research and research subject protection is essential if more is to be done to empower those who are its possible victims as a result of racism.

Despite the wish of many in positions of power to believe that the true legacy of Tuskegee is to have cleansed the evil of racism from research there is, sadly, little in the pages of this book to make one think that is so.

Arthur Caplan

Division of Medical Ethics

NYU Langone Medical Center

New York City, NY

[email protected]