The Tuskegee Syphilis Study. (letters).
First, in recommending Biology of the Negro by Julian Lewis, Reverby claimed that the book "did not consider whether treatment should be different for blacks than for whites." This is incorrect. Lewis briefly described a treatment for blacks that was based on race and medicine--not racism in medicine. In November 1932 research and development of a malarial treatment for neurosyphilis in blacks was begun in Tuskegee. Heretofore, Plasmodium vivax (tertian), the standard used for malariotheraphy in whites, did not take in blacks. Dr. George C. Branche of the Tuskegee Veterans' Hospital found success with P. malariae (quartan). This difference in biological therapy--"White people respond best to tertian malaria (plasmodium vivax); negroes to quartan (plasmodium malariae)"--was acknowledged in the Journal of the National Medical Association and both the syphilology and malariology literature.
Second, Reverby wanted more information on the Stanford Study. The study involved a policy of the Stanford Clinic to withhold treatment intentionally from late latent syphilitics above the age of fifty years, starting approximately in 1935. This study exemplified the intentional nontreatment of whites and blacks, similar to about 30 percent of those in the TSUS. Reverby wrote that the Stanford Study report did not make clear what kind of information was given to the patients. The report from Cornell University Medical Center, which she cited, also did not make clear what kind of information was given to the patients. However, the assurance that "adequate" information was given to patients is a contemporary procedure documented through notation in a published article that an ethics committee has reviewed and approved the study. Nevertheless, information about what was told to participants was not discovered until the original TSUS documents were first reported by Allan Brandt in a 1978 Hastings Center Report article.
Third, identifying the details of the survivors' medical histories is essential for a cogent analysis and understanding of the study. Reverby reported on seventy-one TSUS survivors whose patient records became available in the mid-1970s; thirty-five of the survivors had received penicillin from the late 1940s up until 1972. However, there are outstanding medical questions. What was the treatment and when was the treatment received? Was the treatment curative or adequate? The 1964 article on the study published in the Archives of Internal Medicine suggested that as many as 33 percent of the patients had received curative therapy. How many of the "cured" subjects were represented in the seventy-one survivors? The challenge is to identify the patient numbers of the survivors, indicating who received treatment before public exposure in 1972 and who received treatment after public exposure. Answering these questions is possible because Reverby has acknowledged that al! the TSUS participants have been named in their attorney's book, she has access to the patient records from the lawsuit, and she appeared to raise issues with protecting the subjects' "privacy."
Although there are refereed articles, books, a play, a movie, medical reports, a Presidential apology, and an assortment of other activities and comments about the TSUS, more work is required to obtain a correct and complete picture. This is a formidable and justifiable task for the sake of the many health care stakeholders--patients, health professionals, other health consumers, and the lay community--who believe they can make health decisions based on an incomplete--if not flawed--prevailing analysis.
Robert M. White Silver Spring, Md.
Susan M. Reverby replies:
Dr. White and I share a deep commitment to making as a full an analysis of the Tuskegee Syphilis Study as possible. We both hope to make this work available to a wide audience because the study's continual reverberations in multiple communities have such powerful contemporary effects on ethics, research, and patient care. His letter is an excellent reminder that there is a desperate need to explore how changing assumptions about biological differences are historically contingent and contribute in differing ways both to racism and medical understandings.
A letter forum seems inappropriate for picking at the factual differences between us and explaining our understanding of either Lewis' analysis or the Stanford study's key points. I will respond, however, to one concern in his letter. The patient records I was able to obtain do not go beyond 1972. I cannot know who received treatment after 1972 from the data I have available. I also coded the records without reference to the names. Thus I cannot link the men's names to the list published by Fred Gray, the men's attorney, since I promised anonymity in exchange for use of the records. I believe it would be inappropriate to do so.
I doubt there will ever be what Dr. White hopes for: "a correct and complete picture" of what happened in Tuskegee. At best, we can write well-researched and carefully argued historical explanations and let our work be judged accordingly.