- Open Access
Ethical Failures and History Lessons: The U.S. Public Health Service Research Studies in Tuskegee and Guatemala
Public Health Reviewsvolume 34, Article number: 13 (2012)
Bioethics is often thought of as having been “born in scandal and raised in protectionism.” Less often acknowledged is that bioethics has been so nourished by melodramatic frames that the effort to provide a different form of analysis has been problematic. Using examples of the author’s scholarship on the history and coverage of the United States Public Health Service’s untreated syphilis study in Tuskegee (1932–72) and its sexually transmitted diseases inoculation research studies in Guatemala (1946–48), these histories of medical malfeasance, governmental overreach, and the use of racist and imperial power are examined for the limitations of emotional understandings of “bad scientists” and failures to obtain consent. It is argued that these two tragedies, which have provided an explanation for suspicion of medical and public health research, need to be understood in the context of research hubris and institutional power. They remind us of the necessity for protection of human rights against dangerous excesses of zeal in human research, and the need for researchers to imagine themselves in similar situations.
Levine C. Has AIDS changed the ethics of human subjects research? Law Med Health Care. 1988;16:167–73.
Arras J. Born in scandal, raised in protectionism: the rise of contemporary research ethics. Presented at NIH-sponsored training program, Research Ethics in the Americas, FLASCO, Buenos Aires, Argentina. 29–31 May 2006.
Reverby SM, (editor). Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study. Chapel Hill, NC: University of North Carolina Press; 2000.
Reverby SM. Examining Tuskegee: The Infamous Syphilis Study and its Legacy. Chapel Hill, NC: University of North Carolina Press; 2009.
Reverby SM. Listening to narratives from the Tuskegee syphilis study. Lancet. 2011;377:1646–7.
Reverby SM. “Normal Exposure” and inoculation syphilis: a PHS “Tuskegee” doctor in Guatemala, 1946–1948. J Policy History. 2011;23:6–28.
U.S. Presidential Commission for the Study of Bioethical Issues. Ethically impossible: STD research in Guatemala from 1946 to 1948. Washington, DC: U.S. Presidential Commission for the Study of Bioethical Issues; September 2011. Available from URL: www.bioethics.gov (Accessed 10 January 2013).
U.S. Presidential Commission on Bioethical Issues. Moral science: protecting participants in human subjects research. Washington, DC: U.S. Presidential Commission for the Study of Bioethical Issues; December 2011. available at Available from URL: www.bioethics.gov (Accessed 10 January 2013).
Comisión Presidencial para el Esclarecimiento de los Experimentos en Humanos en Guatemala 1946–48. Comisión técnica: experimentos en seres humanos el caso Guatemala 1946–48. Guatemala: April 2011. Available from URL: http://enriquebolanos.org/hechos_historia/Comisión Presidencial Para El Esclarecimiento DE LOS Experimentos en seres humanos.pdf (Accessed 10 January 2013). [In Spanish]
Gamble VN. Under the shadow of Tuskegee: African Americans and health care. In: Reverby SM, (editor). Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study. Chapel Hill, NC: University of North Carolina Press; 2000. pp. 431–42.
Katz RV, Warren RC, (editors). The Search for the Legacy of the USPHS Syphilis Study at Tuskegee: Reflective Essays Based Upon Findings from the Tuskegee Legacy Projects. Lexington, KY: Lexington Books; 2011.
Bercovitch S. The American Jeremiad. Madison, WI: The University of Wisconsin Press; 1978.
Lumet S. Interview by Rose C. A discussion about the film Before the Devil Knows You’re Dead. Charlie Rose Show; 30 November 2007. Available from URL: http://www.charlierose.com/view/interview/8815 (Accessed 20 January 2011).
Williams L. Playing the Race Card: Melodramas of Black and White from Uncle Tom to O. J. Simpson. Princeton, NJ: Princeton University Press; 2001.
Tompkins J. Sentimental Designs: The Cultural Work of American Fiction, 1790–1860. New York, NY: Oxford University Press; 1985.
Gillman S. Blood Talk: American Race Melodrama and the Culture of the Occult. Chicago, IL: University of Chicago Press; 2003.
Transcript. Barack Obama’s speech on Race. 18 March 2008. New York Times. Available from http://www.nytimes.com/2008/03/18/us/politics/18text-obama.html (Accessed 20 January 2011).
Reverby SM. Website: Examining Tuskegee: The Infamous Syphilis Study and its Legacy. Updated 13 November 2009. Available from: http://www.examiningtuskegee.com/index.html (Accessed 10 January 2013).
Vonderlehr RA, Clark T, Wenger OC, Heller JR. Untreated syphilis in the male Negro: a comparative study of treated and untreated cases. JAMA. 1936;107:856–60.
Olansky S, Schuman SH, Peters JJ, Smith CA, Rambo DS. Untreated syphilis in the male Negro: X. Twenty years of clinical observation of untreated syphilitic and presumably nonsyphilitic groups. J Chronic Dis. 1956;4:177–85.
Reverby SM. A new lesson from the old “Tuskegee” study. Huffington Post; 3 December 2009. Available from URL: http://www.huffingtonpost.com/susan-reverby/a-new-lesson-from-the-old_b_378649.html (Accessed 18 December 2012).
Benedek TG, Erlen J. The scientific environment of the Tuskegee Study of Syphilis, 1920–1960. Perspect Biol Med. 1999;43:1–30.
Shakir M. Ancestral voices of the living, rise-up and claim your bird of passage: an oral history with Tuskegee-Macon County women descendants of the U.S. Public Health Service Syphilis Study. Dissertation. California Institute of Integral Studies: 2011.
Banisky S. At 95, Tuskegee study participant Herman Shaw prefers reconciliation to recrimination, forgiveness to bitterness. The Baltimore Sun; 24 August 1997. Available from URL: http://articles.baltimoresun.com/1997–08–24/features/1997236123_1_tuskegee-study-tuskegee-syphilis-syphilis-study (Accessed 24 December 2012).
Levitan S, Aragon HA, Cutler JC, Funes JM, Portnoy J, Paredes-Luna A. Clinical and serologic studies with reference to syphilis in Guatemala Central America. I. Studies of comparative performance of the Kahn, Kolmer, Mazzini, and VDRL slide tests as carried out in the national orphanage. Am J Syph Gonorrhea Vener Dis. 1952;36:379–87.
Funes JM, Cutler JC, Levitan S, Portnoy J, Funes R. Serologic and clinical studies of syphilis in Guatemala, Central America. II. Study of a group of school children in the port of San José. Bol Oficina Sanit Panam. 1953;34:14–8.
Lynch HF. Ethical evasion or happenstance and hubris? The U.S. Public Health Service STD Inoculation Study. Hastings Cent Rep. 2012;42:30–8.
Galarneau CA. “Ever Vigilant” in research: beyond individual responsibility in the PHS STD experiments in Guatemala,” Hastings Cent Rep. In press.
Moore JE. Personal communication to Parran T, 4 April 1938. Thomas Parran Papers, Box 5, Folder 23, University of Pittsburgh Archives, Pittsburgh, PA.
Jones JH. Bad Blood: The Tuskegee Syphilis Experiment. New York, NY: Free Press; 1981, 1993.
Cutler JC, Levitan S, Arnold RC, Portnoy J. Studies on the comparative behavior of various serologic tests for syphilis. II. A report on an observed pattern of entrance into seroreactivity among patients with untreated primary syphilis. Am J Syph Gonorrhea Vener Dis. 1952;36:533–44.
Portnoy J, Galvez R, Cutler JC. Clinical and serologic studies with reference to syphilis in Guatemala, Central America. III. Studies of comparative performance of the Kahn, Kolmer, Mazzini, and VDRL slide tests among leprosy patients. Am J Syph Gonorrhea Vener Dis. 1952;36:566–70.
Magnuson HJ, Thomas EW, Olansky S, Kaplan BI, De Mello L, Cutler JC. Inoculation syphilis in human volunteers. Medicine (Baltimore) 1956;35:33–82.
Reverby SM. After the media frenzy, preventing another ‘Guatemala’. Bioethics Forum; 6 October 2010. Available from URL: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4919 (Accessed 18 December 2012).
U.S. Department of Health & Human Services. Report on findings from the U.S. Public Health Service Sexually Transmitted Disease Inoculation Study of 1946–1948, based on review of archived papers of John Cutler, MD, at the University of Pittsburgh. Executive Summary. Washington, DC: HHS; 29 September 2010. Available from URL: http://www.hhs.gov/1946inoculationstudy/cdc_rept-std_inoc_study.html (Accessed 19 June 2012).
BBC News US & Canada. US medical tests in Guatemala ‘crime against humanity.’ BBC News US & Canada; 1 October 2010. Available from URL: http://www.bbc.co.uk/news/world-us-canada-11457552 (Accessed 20 June 2012).
Frieden TR, Collins FS. Intentional infection of vulnerable populations in 1946–1948: another tragic history lesson. JAMA. 2010;304:2063–4.
Associated Press. Guatemalan STD lawsuit dismissed. FOX News Latino; 14 June 2012. Available from: http://latino.foxnews.com/latino/health/2012/06/14/guatemalan-std-lawsuit-dismissed/ (Accessed 14 June 2012).
Obasogie O. Clinical trials on trial. New Scientist. 2011;2800:24–5.
Vance CS. Thinking trafficking, thinking sex. GLQ: J Lesbian Gay Studies. 2011;17:135–43.
Löwy I. The best possible intentions testing prophylactic approaches on humans in developing countries. Am J Public Health. 2013;103:226–37. Epub 13 December 2012.
Katz J. The Nuremberg Code and the Nuremberg Trial: a reappraisal. JAMA. 1996;276:1662–6.
Cushman T. Genocidal rupture and performative repair in global civil society: reconsidering the discourse of apology in the face of mass atrocity. In: Brudholm T, Cushman T, (editors). The Religious in Responses to Mass Atrocity: Interdisciplinary Perspectives. New York, NY: Cambridge University Press; 2009. pp. 213–41