I. Title: Humanity and Science: The Paradox of Progress
II. Introduction: Progress is often construed as an ambiguous concept that beckons a movement for the greater good. People seek progress in personal lives, in communities, in nations, but few can fully describe or define the parameters of this concept. Who decides then? Who determines the claims and arguments of progress? And upon discovering the intentions, who polices the boundaries between what can be accomplished in the name of this belief and what should not be done? It is within these uncertainties that the worst travesties in the world have occurred. Such was the case in Macon County, Alabama, where 600 African American men were selected to undergo an experimental study where the United States Public Health Service monitored the spread and effects of latent syphilis in medicine deprived men. These individuals endured forty years of placebos, metal and arsenic injections, and spinal taps with the understanding that they were receiving treatment for their “bad blood.” Instead, medical professionals manipulated the men of Tuskegee, withheld treatment, and misinformed their condition, with the hopes of unraveling the mystery of syphilis in the African American man, all in the name of scientific progress.
III. Macon County, Alabama was the perfect setting for the study to take place.
a. Individuals who lived in Tuskegee were poor, illiterate, and believed they were being offered treatment for their ailments. They had no reason not to believe the doctors and nurses who were overseeing their care. Eunice Rivers, the nurse who befriended the men, convinced the men to stay within the program if they ever chose to leave. Some men thought they were even a part of a social club by participating in the treatments.
a.i. “Syphilis Study Went on After its Apparent Success.” New York Times, September 13, 1972, p. 30. http://search.proquest.com/docview/119561172?accountid=9649.
b. The Tuskegee men were told they had “bad blood,” and not knowing what that meant, allowed themselves to be treated as the doctors and nurses saw fit. Charles Pollard, a victim of the study, claimed he was never told he had a STD and did not know that “bad blood” was synonymous with syphilis.
b.i. Wooten, James T. “Survivor of ’32 Syphilis Study Recalls a Diagnosis.” New York Times, July 27, 1972, p. 18. http://search.proquest.com/docview/119507877?accountid=9649.
IV. Public Health Services, Centers for Disease Control, as well as other medical professionals treated the men of Tuskegee as little more than test subjects. They knew these men were not receiving treatment. As the years progressed and penicillin became available, they still did not treat the infected individuals.
a. While the PHS claims the life of the individual is more important than the study of a disease, they continue to discuss the rate of morbidity with men infected with latent syphilis. The report attempts to create justification of the “necessary” study.
a.i. Shafer, J.K., Lida J. Usilton, and Geraldine A. Gleeson. “Untreated Syphilis in the Male Negro: A Prospective Study of the Effect on Life Expectancy.” Public Health Reports 69, no. 7 (1954): 684-690. http://www.jstor.org/stable/pdfplus/4588863.pdf.
b. Selection of the individuals was dependent on one factor, whether the men involved had syphilis or not. This created a study group of 399 infected men and 201 uninfected men. This report discusses the socioeconomic class of the men as “poor” and they were chosen for their low-economic standing. Perhaps chosen because they could not afford education and were thus illiterate.
b.i. Olansky, Sidney, Lloyd Simpson, and Stanley H. Schuman. “Environmental Factors in the Tuskegee Study of Untreated Syphilis.” Public Health Reports 69, no. 7 (1954): 691-698. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2024316/pdf/pubhealthreporig00175-0085.pdf.
c. This report discussed the variety of tests used to determine the effects of syphilis in its various stages. It is more statistically written, but discussed the Tuskegee Study subjects after 30 years of infection. Although the earlier reports introduced the idea of treatment, it is evident that these men are still being subjugated.
c.i. Moore, M. Brittain Jr., and John M. Knox. “Sensitivity and Specificity in Syphilis Serology: Clinical Implications.” Southern Medical Journal 58, no. 8 (1965): 963-968. http://journals.lww.com/smajournalonline/Citation/1965/08000/Sensitivity_and_Specificity_in_Syphilis_Serology_.7.aspx.
d. Even though the 399 men were never treated for the syphilis, Dr. John R. Heller claimed the entire study was never unethical or unscientific, even though all the subjects were African American. He believed that the men were receiving treatment from their local doctors, even though he had no confirmation. In contrast to what Dr. Heller claims, a local doctor interviewed by the New York Times claimed that he was told not to treat the men who were specifically involved with the Tuskegee Study. Coercion or persuasion was influential in keeping the men in the study and from receiving the medical attention they desperately needed.
d.i. “Ex-Chief Defends Syphilis Project.” New York Times, July 28, 1972, p. 29. http://search.proquest.com/docview/119377466?accountid=964.
d.ii. Doctor Says He was Told Not to Treat Men in V.D. Experiment.” New York Times, August 8, 1972, p. 16. http://search.proquest.com/docview/119507914?accountid=9649.
V. The Tuskegee Syphilis Study has left a horrible taint in the minds of the public, medical practitioners, and the African American community. Although the study was being documented through Public Health Reports, it was not until the media became aware of the situation that ethical questions and concerns became evident.
a. Jean Heller, a member of the Associated Press, received information regarding the study. Her research and initial report opened the doors for media criticism and public awareness. It also explained the study to many of the victims who did not know they were involved in the Tuskegee Syphilis Study.
a.i. Heller, Jean. “Syphilis Victims in U.S. Study Went Untreated for 40 Years.” New York Times, July 26, 1972, p. 1. http://search.proquest.com/docview/119530241?accountid=964.
b. Jane Brody wrote an article discussing the lack of medical and humanistic ethics within the study. She emphasizes how the study is morally wrong, but even more so because the victims were of one race. This evolved from one horrible tragedy to involving race issues after the Civil Rights movement.
b.i. Brody, Jane E. “All in the Name of Science.” New York Times, July 30, 1972, sec. E2, p. 1. http://search.proquest.com/docview/119474892?accountid=9649.
c. Reaction from the public, spurred by the media, halted the Tuskegee Study and brought medical attention to the men who survived the 40 years of malpractice. In Pollard vs. United States, monetary compensation was given to the survivors and the families of the victims. Medical ethics became scrutinized and clinical research trials were revolutionized to avoid the stigma that was associated with the Tuskegee Study.
c.i. Kampmeier, R.H. “Final Report on the “Tuskegee Syphilis Study”.” Southern Medical Journal 67, no. 11 (1974): 1349-1353. http://journals.lww.com/smajournalonline/Citation/1974/11000/Final_Report_on_the_Tuskegee_Syphilis_Study_.19.aspx.
c.ii. Dawson, George. “Last Survivor of Infamous Tuskegee Syphilis Experiment Dies.” Journal of the National Medical Association 96, no. 3 (2004) http://search.proquest.com/docview/214062282?accountid=9649
VI. Conclusion: The pursuit of scientific progress can lead to ethical dilemmas if humanistic perspective is not taken into account. In the case of the Tuskegee Syphilis Study, racial prejudices were evident. Lack of medical treatment for the victims during the forty years of study only worsened the stigma that would be associated with the PHS and government aid after its exposure. While the intent of the study was aimed at the progression of syphilis, the objectification of the victims has left a taint within the minds of the African American community and the general public. The pursuit of scientific progress that started the study became a racial and ethical battleground.
VII. Secondary Sources
a. Curing Cancer: Clinical Research Trials. Films Media Group, 2003. Films On Demand. H.264, http://digital.films.com/PortalPlaylists.aspx?aid=1731&xtid=35050.
a.i. This small segment discusses clinical research trials in the 21st century. Although these studies have become more ethically aware and are patient oriented, the fear among African Americans is evident. The Tuskegee Syphilis Study is embedded in their fear, which is as pervasive now as it was in the 1970s. This source would be useful in looking at the long-term societal effects resulting from the study as well as noting that the intended scientific progress did much more harm.
b. Diianni, Denisce, and George Strait. The Deadly Deception. DVD. Boston: WGBH Boston Video, 1993.
b.i. The documentary interviews survivors and families of survivors after the exposure of the Tuskegee Syphilis Study. It would make for a great source in understanding what the victims understood of the study and their reactions upon discovering the true intentions.
c. Jones, James H. 1981. Bad blood: the Tuskegee syphilis experiment. New York: Free Press.
c.i. Jones explains the severity of syphilis, as well as terms and brands associated with the STD in conjunction with the study. It would be useful to use this material in regards to fully understanding the disease and cultural implications.
d. Reverby, Susan. 2009. Examining Tuskegee the infamous syphilis study and its legacy. Chapel Hill: University of North Carolina Press. http://public.eblib.com/EBLPublic/PublicView.do?ptiID=475201.
d.i. Reverby uses interviews with the survivors as well as discussions with journalists in writing this book. She approaches the interpretation with multiple perspectives, which is useful in understanding why the debacle is still prominent in the minds of physicians and the study-aware public.
e. Lambardo, Paul A., and Gregory M. Dorr. “Eugenics, Medical Education, and the Public Health Service: Another Perspective on the Tuskegee Syphilis Experiment” Bulletin of the History of Medicine 80, no. 2 (2006): 291-316. http://muse.jhu.edu/journals/bulletin_of_the_history_of_medicine/v080/80.2lombardo.html.
e.i. This perspective is unique in that is discusses the intentions of the Tuskegee Study in relation to eugenics in medicine. The authors claim that the original instigators of the study were eugenics students and used this background in forming the foundation of the study. It portrays the Tuskegee Syphilis Study on the same horrific grounds as the Nuremberg Trials.
f. White, Robert M. “Challenges in a Narrative About the Tuskegee Study of Untreated Syphilis.” Journal of Transcultural Nursing 19, no. 2 (2008): 105-106. http://tcn.sagepub.com/content/19/2/105.full.pdf+html.
f.i. This perspective attacks the sensationalism news reports and claims thirty years after the Tuskegee Syphilis Study. This article is important because it ensures that as time occurs, dramatizations should not distort the truth of the events. While it is important that everyone should know and remember the horrors of this study, exaggerations and fallacies will not help the push for ethical concerns in research and trials.
Reflections
There are many good reasons why primary sources should be digitized and available for the general public. Readily accessible information brings knowledge and awareness to certain topics. In this case, I was able to garner information directly from the Public Health Reports in regards to the Tuskegee Syphilis Study. While the majority of digitized sources were unavailable through online portals, the few I found were able to provide insight from very unique perspectives, even if I did not agree with them. I was able to find articles from digitized versions of the New York Times, which provided the foundation for this paper.
Majority of my challenges occurred early on, as I attempted to use online databases. Many of the databases provided articles, books, and film, but unfortunately they were all secondary sources. As I delved further into my research, I attempted to use big data sites, hoping an aggregation of sources would award me with a plethora of information. Unfortunately, every database I used was unable to provide me with information concerning this specific study, instead providing information about the Tuskegee Airmen. Oddly enough, it was the Boise State Library database that awarded me the most as I found journal subscriptions with the Southern Medical Journal, Public Health Reports, and historic newspapers.
I picked a topic from the 20th century, which greatly helped in the acquisition of digitized primary sources. And while I did find sources that were beneficial to my paper, more than I thought I would find, the majority of the sources came from the 1970s newspaper articles. Having the restriction of only using digitized primary sources limited my abilities in gaining insight into the origins of the Tuskegee Study. The study began in 1932, but the earliest primary source came from the 1950s, that is twenty years of primary sources I am unable to interpret. I would have to rely on physical primary sources (i.e. health reports, coronary reports, oral histories) or secondary sources if I wanted to truly stabilize my arguments and claims.
I truly believe that digitizing sources is beneficial for researchers, regardless of education experience. It was easier to find information, analyze findings, and interpret the story without having to do the legwork of finding each individual source through books, archives, or oral histories. However, researchers should also be aware that relying solely on digitized primary sources could be very dangerous. Limitations on sources can create misinterpretations, and it is important that all aspects of a history be told as accurate as possible. Writing historical research papers is difficult, and until all sources (both primary and secondary) are digitized and available through online sites or databases, physical legwork will always be required.