Here are some of the individuals and artifacts associated with the history of the Tuskegee Syphilis Study. (compiled by H. Brody; photo credits: US Public Health Service; Tuskegee University Archives)
Sources:
James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment, New York: The Free Press, 1993 (expanded ed.)
Fred D. Gray, The Tuskegee Syphilis Study, Montgomery, AL: Black Belt Press, 1998.
Susan M. Reverby (ed.), Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study, Chapel Hill, NC: U. of North Carolina Press, 2000.
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James Jones |
Fred Gray |
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Begun in 1909 and published in 1928, this study reported on the natural history of untreated syphilis in a group of white males. The racist assumptions then prevalent in American medicine biased physicians to assume that the disease would probably follow a different course in African-American males. Hence many saw value in replicating such a study among blacks in the U.S.
The venereal disease section in the U.S. Public Health Service (PHS) had attracted a group of physicians who, based on the standards of the day, were often very liberal in matters of race. They were concerned about the relative neglect of the treatment of venereal disease in the African-American community and thought that with better science and better treatment, syphilis could be prevented and cured among this population. They also were more likely than most whites of the day to urge the advanced training and hiring of black staff, work alongside black professionals, and try to form partnerships with the black community. Like most white scientists of their day, they viewed all research subjects, especially the uneducated, as basically unable to grasp the nature of a scientific research project, and unwilling to consent to research unless given special inducements. They were also zealous in trying to advance their scientific and public health agenda for the presumed good of the community.
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Macon County, east of Montgomery, was part of the "black belt" of Alabama so-called because of the rich dark soil. It was home to the Tuskegee Institute, the foremost black college in the nation, but had few towns and was primarily populated by poor farmers, 90% of them black. In the 1930's it was severely depressed economically; and as in all of the South, public facilities were rigidly segregated by race. The state spent $65 annually for each white student in the county schools and $7 for each black student. The county had few doctors and only two hospitals, one of which, John Andrew Hospital, was on the grounds of the Tuskegee Institute and was primarily intended for Institute staff and students, even though it also served as the major source of medical care for much of the black community.
The Rosenwald Fund was a charity supportive of education and health care for African-Americans. In 1929-31, the Fund collaborated with the U.S. Public Health Service to administer a demonstration project for syphilis detection and treatment in 5 Southern rural counties. Of these 5 counties, Macon Co. was found to have the highest rate of endemic infection, 36% of the total black population. Blacks eagerly sought testing and treatment, contrary to the assumptions of many that they were neglectful of their own health and fatalistic about syphilis. As part of the Rosenwald study, a noted black sociologist, Charles Johnson, did a study of the county and its people and took these photos of a typical farm cabin and sharecropper.
Dr. Clark's name is most commonly associated with the start of the Tuskegee Syphilis Study. (When I lived in Virginia, I was informed that the family name "Taliaferro" was to be pronounced "Tolliver.") A senior PHS officer, Dr. Clark's attachment to the Rosenwald Study assured that that effort would receive high-level support from the Government. After the Rosenwald project ended, the high rate of untreated syphilis among the blacks of Macon County seemed to call for further work in that area. Funds were too short in those Depression years for a full continuation of the Rosenwald effort. Eventually, in 1932 Clark directed the start-up of a PHS funded study in Macon County. The initial aim was to follow untreated syphilis in a group of black men only for 6-8 months and then follow up with a treatment phase. Nevertheless Dr. Clark agreed with the deceptive practices suggested by his deputy, Dr. Vonderlehr, and complained about how costly the treatment aspect of the study was. Clark wrote a colleague in defense of the use of deception in calling the spinal taps "treatment", "These negroes are very ignorant and easily influenced by things that would be of minor significance in a more intelligent group." Clark retired the year after the beginning of the study.
Dr. Dibble was head of the John Andrew Hospital at the Tuskegee Institute. He wrote to Dr. Robert Moton, President of the Institute, to encourage Tuskegee's full cooperation and involvement in the study, which would "offer very valuable training for our students as well as for the Interns.... our own hospital and the Tuskegee Institute would get credit for this piece of research work." Dr. Dibble and his staff assisted with some aspects of the study, including the spinal taps, and recommended Eunice Rivers as the project's nurse.
Fred Gray (who among other legal posts has been counsel to Tuskegee University) strongly objects to holding Drs. Dibble and Moton blameworthy for any complicity in the Study and insists that they were as much the victims of the study as the 623 men who were eventually enrolled in it (both as experimental and as control subjects). He argues that a prominent black institution, very much dependent upon white philanthropy, could not afford in the 1930's to risk antagonizing the U.S. Government by refusing to participate in a PHS activity of this sort.
Dr. Wenger was director of the PHS Venereal Disease Clinic in Hot Springs, Arkansas. He was an enthusiastic supporter of mass screening for syphilis and mass treatment programs in the black community. At various stages of the Rosenwald Fund project and the Tuskegee Syphilis Study, Wenger was attached to the Macon County activities, and he played a critical role in developing early study protocols. Despite his support for treatment programs, Wenger readily gave his advice and assistance when the Tuskegee Study turned into a long term, no-treatment observational study. He consistently supported a policy of concealing the aims of the study from the subjects if he feared that full disclosure would lead to their non-cooperation.
Drs. Clark and Wenger selected the 35-year-old Vonderlehr as the on-site director of the Tuskegee Syphilis Study in 1932. Vonderlehr conducted many of the initial physical exams and became enthralled with the wide variety of pathological changes he found. Initially Vonderlehr actively supported giving the men partial treatment for syphilis (even though the treatment the PHS could afford to give was much less than the amount thought necessary for cure of syphilis) because only with treatment would the men be willing to remain in the study.
In 1933, when the planned one-year term of the study was over, the PHS released Nurse Rivers; but Vonderlehr began to lobby Dr. Clark to continue the study as a long term follow-up of untreated (or, in truth, undertreated) syphilis in the black male. When Clark retired and Vonderlehr was named as his replacement as head of the venereal disease section of PHS, he was able to implement his plan.
Vonderlehr then developed the policies that gave shape to the next phase of the project, though even he could not foresee that the study would eventually last 40 years. He decided to gain the "consent" of the men for the painful and invasive spinal taps (to look for signs of neurosyphilis) by depicting the diagnostic tests as a "special free treatment." This led Dr. Wenger to congratulate him later for his "flair for framing letters to negroes." Vonderlehr retired as head of the venereal disease section in 1943.
Dr. Heller was Dr. Vonderlehr's assistant in charge of on-site medical operations in the Tuskegee Study for many years before he succeeded Vonderlehr as director of the venereal disease section of PHS (1943-48). Heller's leadership coincides with the years when penicillin was introduced as routine treatment for syphilis in PHS clinics, and when the Nuremberg Code to protect the rights of research subjects was formulated. Heller was alive when the study was brought to public attention in 1972, and he stoutly defended the ethics of the study and claimed that he saw no association whatever between the unethical experiments performed by the Nazis and the Tuskegee Syphilis Study.
"Miss Rivers" trained at Tuskegee and was working at the John Andrew Hospital when Dr. Dibble recommended her to Dr. Clark as the chief on-site assistant for the Tuskegee Syphilis Study. Later, Dr. Vonderlehr became a strong advocate for her role in the project and argued for retaining her services even when Dr. Wenger complained that her salary funds could be better spent on other things. As the study became a perennial fixture within the PHS, Nurse Rivers became the chief continuity person and was the only staff person to work with the study for all 40 years of its existence (she continued to help out with the summer "round-up" of the subjects for physical exams even after she retired in 1965).
Ms. Rivers trained in nursing during an era when following the physician's orders without question has the hallmark of good nursing practice. Fred Gray reminds us that as a black woman in the South in the 1930's, working under the direction of white male doctors, she could not realistically be expected to object or to alter any aspect of the study.
By the 1950's, however, one could argue that Ms. Rivers' role had evolved. The study physicians, as they became more and more dependent upon her knowledge of and personal relations with the subjects, tended to view her as more of an equal colleague. This photo of some of the study team from the early 1950's illustrates her enhanced recognition.
Eunice Rivers also appeared a principal author of one of the reports on the study published in 1953. Full text of report
In interviews prior to her death, Ms. Rivers made it clear that she felt that the subjects benefited greatly from being in the study. They received regular physical exams from "government doctors," a service not available to the vast majority of their peers in Macon County. Later on, the PHS budget was able to pay for medical care for the men for various minor complaints, so long as no treatment was given for their syphilis. Ms. Rivers was described by all the subjects as appearing wholly dedicated to their well-being and very attached to them. Here is how she herself described the "ethics" of her role in her 1953 article:
During the 40 years of the study, numerous papers were authored by the PHS team. Specialists in syphilis around the world all knew of this long-term study of untreated syphilis. Ironically, virtually no member of the non-medical public in Macon County, Alabama, much less the men who were the actual subjects, knew that this study was being conducted.
The PHS leaders employed many strategies to keep the subjects happy with their involvement in the study so that as many as possible could be "brought to autopsy." This special certificate was distributed to all surviving participants in 1958, and praises them for their involvement in the "Tuskegee medical research study." Even at this late date the men did not know that the disease for which they were being observed, and not adequately treated, was syphilis.
Mr. Pollard (a Macon County farmer) appeared in Fred Gray's law office in Tuskegee, Alabama on July 27, 1972. He mentioned the news stories, just recently out, that "blew the whistle" on the Tuskegee Syphilis Study. He stated that he had been one of the subjects in the study for the past 40 years, and felt that his being in the study without knowing what it was and that he was being denied treatment was a violation of his civil rights-- so he naturally approached the lawyer who had represented Rosa Parks in her action against the bus system of Montgomery. That conversation led to the class action lawsuit of Pollard v. United States. Eventually the U.S. government settled the lawsuit by setting up a fund to compensate the surviving subjects and the families of the others, and to assure all study survivors access to decent health care. Mr. Pollard was born in 1906 and died in the spring of 2000.
Mr. Shaw, born in 1902, was a farmer and mill-worker. He received a public school education which included Latin, Greek, and algebra but was unable to go to college. As one of the best-educated study subjects, he was chosen by his peers to deliver the response to President Clinton in the White House on May 16, 1997, when the President delivered a formal apology on behalf of the U.S. for the Tuskegee Syphilis Study. (You may read the apology, and hear audio of Mr. Shaw's response, at the National Center for Bioethics at Tuskegee.) Five surviving study subjects (including Charlie Pollard) were able to attend the White House ceremony. Mr. Shaw died in the spring of 2000.
While virtually no one today defends the ethics of the Tuskegee Syphilis Study, condemnation of the study and its originators takes various forms. It is common to hear the view that a study of untreated syphilis may have been ethically acceptable in the 1930's when the only effective anti-syphilis treatment were the highly toxic arsenic and mercury compounds, but it became clearly unethical with the advent of penicillin in the 1940's. It is therefore worth pondering a point highlighted by historian James Jones-- that any wealthy white man in the U.S., diagnosed with syphilis in 1932 and requesting from his physician "the best" available treatment, would have without question been given the arsenical and mercury regimen. The regimen could potentially cure a severe, life-long disease with complications in multiple organ systems (not unlike cancer) and was no more toxic than many cancer chemotherapy regimens are today. Jones therefore questions whether the 1940's represents the sort of ethical turning point that many have suggested.
The racism inherent in the study, and in the times during which the study was conceived and carried forward, is another common theme in ethics discussions. It is important to discern exactly what forms this racism took. One question worth asking is: If (as James Jones writes) the "syphilis men" of the PHS were among the more liberal thinkers of their day on racial matters, how did they come to begin a study which has had such a negative impact and long-lasting negative heritage for the very community they saw themselves as trying to serve? One possible answer suggested by the above glimpses is that their perspectives were profoundly influenced by a class divide that was in some ways even deeper than the racial divide. They assumed that uneducated people simply could not understand science and medical research, so that any effort to disclose or explain the nature and goals of a study would be wasted effort and would, if anything, drive away subjects. Because of this, how did their own knowledge of their high service ideals-- trying to eliminate syphilis from the African-American community--actually make them even more dangerous to that community from an ethical standpoint? And what implications does this have on how medical researchers would have treated the white subjects of experiments during this same era? Today?