Lest we forget: The Tuskegee Experiment
In 1932 the U.S. government promised 399 African Americanmen free treatment for Bad Blood, a euphemism for syphilis,which was epidemic in Macon County, Alabama. All of the men were residents of Macon County; all were poor and unedu- cated, and none of them received the promised treatment. The men became unwitting participants in a government sanctioned medical investigation, “The Tuskegee Study of Untreated Syphilis in the Negro Male”, which lasted 4 decades and had nothing to do with treatment. No new drugs were tested; the efficacy of old treatment modalities was neither confirmed nor refuted, and when a definitive treatment for syphilis became available in 1942, it was withheld Qones, 1992).
A Prospective Study For a few months, the men received exceedingly low, non-
therapeutic doses of mercurial ointment and bismuth, which were the somewhat effective, but quite toxic treatments of the day; however, funding never materialized to pay for extended treat- ment. Instead of calling a halt to the study, U.S. Public Health Service investigators decided to salvage their work by compil- ing data on spontaneous evolution of syphilis and its effects on African American males. The scientific objective was to compare the pathological manifestations of untreated syphilis documented at Tuskegee with findings of an earlier study conducted in Olso, Norway, but there was a big difference: The Olso study had been a retrospective investigation in which researchers pieced together information from syphilitic white males who had remaineiJ un- treated for a long time prior to the study’s start in 1928 (Benedek, 1978; Jones, 1992).
Ethical Misconduct According to current human protections guidelines, ethi-
cal considerations in the Tuskegee Study were limited from the beginning, and they rapidly deteriorated. Participants were unin- formed, and deception was used throughout. One survivor noted, “I don’t know what they used us for. I ain’t never understood the study.” Misleading letters were sent to participants encouraging their submission to painful diagnostic procedures and post-mor- tem autopsies. When considered in light of Depression era eco-
Thefournal of Theory Construction & Testing
nomics, simple and inexpensive incentives were subtly coercive. Hot meals served on exam days, transportation to town, free care for minor ailments, and a $50 burial insurance policy attracted and retained participants who lived in desperately deprived conditions (Benedek, 1978). Sympathetic attention from trained physicians and nurses was the most seductive inducement of all.
Standard treatment withheld. Although Penicillin was the standard treatment for syphilis by the mid-1940s, participants in the Tuskegee Study were denied access to it. A few men who questioned the study’s non-therapeutic protocol were warned of the “dangers” of taking Penicillin. By 1972 when the experiment ended, 28 of the original 399 men had died directly of syphilis, and 100 more were dead from related complications. Forty wives had been infected, and 19 children had been born with congenital syphilis Oones, 1992).
Vulnerable population exploited. The Tuskegee Experi- ment, as it commonly known, symbolizes the medical misconduct and blatant disregard for human rights that take place in the name of science. Perhaps rightly compared to Nazi doctors and nurses, the principal investigators were not mad scientists. They were government employees, esteemed men and women of sci- ence, who published study findings in respected medical Journals (Kampmeier, 1974; Pesare, Bauer, oí Gleeson, 1950; Rivers et al, 1953; Vonderlehr et al, 1936). The participants, nearly 400 African American sharecroppers from rural Alabama, demonstrate that the burden of medical experimentation has historically been borne by the most vulnerable populations – those who are least able to protect themselves from abuse and exploitation.
The Tuskegee Legacy In 1997, President Bill Clinton issued a formal apology for
the egregious wrongs committed by the U.S. government in the Tuskegee Study. But the Tuskegee Study’s harmful legacy lives on in the African American community. Because the experiment was perpetuated exclusively on African Americans, it has tainted their relationship with members of the health professions. The Study is cited as one reason why few African Americans participate in
– 5 – Volume 13, Number J
clinical research, why they frequently avoid preventative care, and why rumors of government-controlled genocide (e.g., AIDS epi- demic, birth control) persist to the present day (Katz et al, 2006).
Center for bioethics established. With his official renounce- ment of the Tuskegee Syphilis Study, President Clinton provided seed funding to establish the National Center for Bioethics in Research and Health Care at Tuskegee University. As outlined in the Final Report of the Syphilis Study Legacy Committee (1996), a group of dedicated individuals who pursued a presidential apol- ogy and the Center’s establishment, the Center aims to transform the negative Tuskegee legacy into a positive one. The positive legacy celebrates achievements of Tuskegee University, which were obscured by the Study’s notoriety, rebuilds African Americans’ trust in the health care and scientific communities, and encour- ages research with diverse populations.
Institutional review required. Years before the Center for Bioethics was established, the National Research Act of 1974 was passed after public revelation of the Tuskegee Study (Heller, 1972). This act catalyzed formation of Institutional Review Boards (IRBs) that screen and regulate research studies involving human participants in institutions or organizations receiving fed- eral funds. IRBs are poised to ensure that research protocols meet stringent criteria for scientific merit and ethical responsibility.
This Issue ofJTCT JTCT is committed to publishing research that is scientifi-
cally sound and ethically responsible. In this issue of JTCT, con- tributing authors of two complementary articles cite the Tuskegee Study as pivotal to prevalent distrust of formal health care among African Americans. Harris analyzes the concept of conspiracy theory in African American culture, and Kennedy proposes a psychosocial model of racism to predict health outcomes. The remaining authors address other vulnerable and high-risk popula- tions. Clark, Farnsworth and Landrum report the measurement of incivility in nursing education; McLachlan and Justice examine the experiences of international students, and Shanks explores utility of the Health Belief Model with patients initiating cardiac rehabilitation.
REFERENCES Benedek, T.G. (1978). The Tuskegee study of syphilis: Analysis of moral and
methodological aspects, fournal of Chronic Disease, 31(\), 35-50. Final Report of the Syphilis Study Legacy Committee (1996). Accessed at
Tuskegee University. http://www.tuskegee.edu/global/story.asp?s=7609089. Retrieved on 03-28-2009.
Heller, J. (1972). Syphilis victims in the U.S. study went untreated for 40 years. New York Times (Associated Press), July 26, 1, 8.
Jones, J.H. (1992). Bad blood: The Tuskegee syphilis experiment. New York: Simon & Schuster.
Kampmeier, R.H. (1974). Final report of the Tuskegee syphilis study Southern Medical Journal, 67(\\), 1349-1353.
Katz, R.V., Kegeles, S.S., Kressin, N.R., Green, B.L., Wang, M.Q., James, S.A., Russell, S.L., & Claudio, C. (2006). The Tuskegee fegacy project: Willing- ness of minorities to participate in biomédical researm. Journal of Health Care for the Poor & Underserved, 17(4), 698-715.
Pesare, P.J., Bauer, T.J., & Gleeson, G.A. (1950). Untreated syphilis in the male Negro: Observation of abnormalities over 16 years. Amtvican Journal of Syphilis, Gonorrhea & Venereal Diseases, 34, 201-213.
Rivers, E., Schuman, S.H., Simpson, L., & Olansky, S. (1953). Twenty year fol- low-up experience in a long-range medical study. Public Health Reports, 68, 391-395.
Vonderlehr, R.A., Clark, T, Wenger, O.C, & Heller, J.R. (1936). Untreated syphilis in the male Negro: A comparative study of treated and untreated C3ses. fournat of Venereal Diseases, 27, 34-38.
The fournal of Theory Construction & Testing -6- Volume 13, Number 1