Making up 'Vulnerable' People: Human subjects and the subjective experience of medical experiment

Social History of Medicine

Volumn 28, Issue 4, 2015, Pages 825-848

  Campbell, Nancy D ^a   Stark, Laura ^b  

^a RENSSELAER POLYTECHNIC INSTITUTE   (United States)

^b VANDERBILT UNIVERSITY   (United States)

Author keywords

Bioethics; Clinical trials; Hacking; History of medicine; Human sciences; LSD studies; Ontology

Indexed keywords

EID: 84950139224     PISSN: 0951631X     EISSN: 14774666     Source Type: Journal    
DOI: 10.1093/shm/hkv031     Document Type: Article

References (96)

1. J. N. F. Leopold and E. S. Gardner, Life Plus 99 Years (New York: Doubleday & Co., 1958), 307.
2. Nathaniel Comfort, 'The Prisoner as Model Organism: Malaria Research at Stateville Penitentiary', Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, 2009, 40, 190-203. The malaria experiment was sponsored by the Office of Scientific Research and Development. Records of the Stateville malaria studies are housed at the archives of the National Academies of Science, Washington, DC.
3. See Edwin Cowles Andrus, Advances in Military Medicine, MadebyAmeri-can Investigators(Boston: Little, Brown and Co., 1948), Vol. II, 877.
4. For an overview of OSRD anti-malarial research, see chapter 8 by James A. Shannon, 'Clinical Testing of Antimalarial Drugs'. OSRD records are collected under Medical Division, Board for Coordination of Malarial Studies; Panels, Clinical Testing, Testing Centers; Illinois State Penitentiary-Stateville (Washington, DC: National Academies of Science).
5. For a similar interpretation from legal history, see Bernard E. Harcourt, 'Making Willing Bodies: The University of Chicago Human Experiments at Stateville Penitentiary', Social Research, 2011, 78, 443-478.
6. As sources of historical evidence, oral histories and interviews are treated with trepidation if not suspicion. Recently, historians have pointed to the weaknesses of oral histories but also distinguished their strengths as a unique form of evidence. See e.g. Lee Smith, Oral History. (New York: Putnam, 1983)
7. C. Jerolmack and S. Kahn, 'Talk Is Cheap: Ethnography and the Attitu-dinal Fallacy', SociologicalMethodsResearch, 2014, 43, 178-209. Examining the limits of interviews and self-reports of attitudes and behaviours for explaining 'what people actually do', Jerolmack and Khan argue that analysis proceeding from ethnographic observation offers more complete accounts of the ways in which what people say or do depends on how theydefine the situation. While we cannot perform ethnographic observation in sites that no longer eixst, we have each produced contextually situated accounts of the laboratories in which these human subjects participated in the 1950s
8. Nancy D. Campbell, Discovering Addiction: The Science and Politics of Substance Abuse Research (Ann Arbor, MI: University of Michigan Press, 2007)
9. Laura Stark, Behind Closed Doors: IRBs and the Making of Ethical Research (Chicago, IL: University of Chicago Press, 2012).
10. Gregor Feindt, Felix Krawatzek, Daniela Mehler, Friede-mann Pestel and Rieke Trimgev, 'Entangled Memory: Toward a Third Wave in Memory Studies', History and Theory, 2014, 53, 24-44.
11. David Reubi, 'The Human Capacity to Reflect and Decide: Bioethics and the Reconfiguration of the Research Subject in the British Medical Sciences', Social Studies of Science, 2012, 42, 348-68
12. David Reubi, 'Re-moralising Medicine: The Bioethical Thought Collective and the Regulation of the Body in British Medical Research', Social Theory & Health, 2013, 11, 215-35.
13. Roger Cooter, 'Inside the Whale: Bioethics in History and Discourse', Social Historyof Medicine, 2010, 23, 665.
14. See also Stephen Toulmin, 'How Medicine Saved the Life of Ethics', Perspectives in Biology and Medicine, 1982, 25, 736-50.
15. Sociological and anthropological literature on bioethics indicates the limits of bioethical understandings of the human subject inscribed within notions of 'informed consent', respect for persons, and beneficence. See Onagh Corrigan, 'Empty Ethics: The Problem with Informed Consent', Sociology of Health and Illness, 2003, 25, 768-92
16. Richard Tutton and Onagh Corrigan, eds, Genetic Databases: Socio-Ethical Issues in the Use ofDNA (New York: Routledge, 2004)
17. Raymond De Vries, Kristina Orfali, and Charles Bosk, eds, The View from Here: Bioethics and the Social Sciences (Oxford: Wiley-Blackwell, 2007).
18. There is a robust literature on the American mien of 'global' bioethics. For a good starting point, see Renee C. Fox, Judith P. Swazey and J. C. Watkins, Observing Bioethics (New York: Oxford University Press, 2008)
19. Adam Hedgecoe, '"A Form of Practical Machinery": The Origins of Research Ethics Committee in the UK', Medical History, 2009, 53, 331-50.
20. Samuel Moyn, The Last Utopia: Human Rights in History (Cambridge, MA: Belknap Press of Harvard University Press, 2010)
21. Lynn Hunt. The Invention of Human Rights (New York: Norton, 2008).
22. J. D. Skrentny, The Minority Rights Revolution (Cambridge, MA: Belknap Press of Harvard University Press, 2002).
23. Reubi, 'Human Capacity to Reflect and Decide', 356-7.
24. See Ian Hacking, HistoricalOntology(Cambridge, MA: Harvard University Press, 2002), in particular 'Making Up People',99-114.
25. On the scientific self, see Lorraine J. Daston and Peter Galison, Objectivity (Brooklyn: Zone Books, 2007), 35-9.
26. Many historians of medicine have recently deployed Hacking in their studies with fruitful effect, e.g. Sarah E. Igo, The Averaged American: Surveys, Citizens, and the Making of a Mass Public (Cambridge, MA: Harvard University Press, 2007)
27. Michael Pettit, 'Becoming Glandular: Endocrinology, Mass Culture, and Experimental Lives in the Interwar Age', TheAmerican Historical Review, 2013, 118, 1052-76.
28. Paul Roth, 'The Pasts', History and Theory, 2012, 51, 313-39.
29. E.g. Roberto Abadie, The ProfessionalGuinea Pig: Big Pharma and the Risky World of Human Subjects (Durham, NC: Duke University Press, 2010)
30. Allan M. Hornblum, Sentenced to Science: One Black Man's Story of Imprisonment in America (University Park: Pennsylvania State University Press in Association with the Pennsylvania State University Libraries, 2007)
31. John D. Marks, The Search for the 'Manchurian Candidate' (New York: Norton, 1991)
32. Sonia Shah, The Body Hunters: How the Drug Industry Tests its Products on the World's Poorest Patients (New York: The New Press, 2006)
33. Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Harlem Moon, 2007)
34. Eileen Welsome, The Plutonium Files: America's Secret Medical Experiments in the Cold War (Dial Press, New York, 1999).
35. Regarding human-animal interactions, see Vinciane Despret, ' From Secret Agents to Interagency', History and Theory, 2013, 52, 29-44
36. D. G. Shaw, 'The Torturer's Horse: Agency and Animals in History', History and Theory, 2013, 52, 146-67.
37. Sydney A. Halpern, Lesser Harms: The Morality of Risk in Medical Research (Chicago: University of Chicago Press, 2004)
38. Jenny Hazelgrove, 'The Old Faith and the New Science: The Nuremberg Code and Human Experimentation Ethics in Britain, 1946-73', Social History of Medicine, 2002, 15, 109-35
39. Rebecca M. Herzig, Suffering for Science: Reason and Sacrifice in Modern America (New Brunswick: Rutgers University Press, 2006)
40. Susan Lederer, Subjected to Science: Human Experimentation in America before the Second World War (Baltimore, MD: The Johns Hopkins University Press, 1995)
41. Talitha Bolton, '"Never Volunteer for Anything": The Concept of the " Volunteer" in Human Experimentation During the Cold War', University of Sussex Journal of Contem-porary History, 2005, 9, 1-14. Each of these authors explore howhuman subjects were figured before the advent of bioethics with particular reference to the discourse of voluntarism, heroism, martyrdom and sacrifice for the good of society.
42. Susan Reverby, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy (Chapel Hill: University of North Carolina Press, 2009).
43. Erika Dyck, Psychedelic Psychiatry: LSD from Clinic to Campus. (Baltimore, MD: The Johns Hopkins University Press, 2008)
44. Steven J. Novak, 'LSD before Leary: SidneyCohen'sCritiqueof1950sPsychedelicDrugRe- search', Isis, 1997, 88, 87-110.
45. Nicolas Langlitz, Neuropsychedelia: the Revival of Hal-lucinogen Research Since the Decade of the Brain (Berkeley: University of California Press, 2013), 29-30.
46. Charles Savage and L. S. Cholden, 'Schizophrenia and the Model Psychoses', Journal of Clinical and Experimental Psychopathology, 1956, 17, 405-13.
47. Charles Savage, 'The Uses and Abuses ofLSD in Psychotherapy,' Third World Congress of Psychiatry, 1961, 466.
48. When CIA funding came to public light in the 1970s, NIHCC researchers managed most inquiries internally and were cleared of using any CIA money for LSD experiments. ARC researchers testified extensively in televised congressional hearings about CIA-sponsored experiments conducted in Lexington from 1953 to 1963. The ARC was forced to move to Baltimore and undergo reorganization, whereas the NIHCC laboratories endure in their original site to this day. John D. Marks, TheSearch forthe 'Manchurian Candidate' (New York: Norton, 1991).
49. National Commission Meeting Proceedings #14, January9, 1976, Box26, KennedyCenter, 95-6.
50. National Commission, Research Involving Prisoners: Report and Recommendations. Department of Health, Education and Welfare (OS) 76-131 (Washington, DC: U.S. Government Printing Office, 1976), 31, 47.
51. Campbell, Discovering Addiction, 2007. National Commission Report of a Site Visit, Addiction Research Center, Lexington, Kentucky, May 3, 1976. Box 26, Kennedy Center.
52. Caroline J. Acker, Creating the American Junkie: Addiction Research in the Classic Era of Narcotic Control (Baltimore, MD: The Johns Hopkins University Press, 2002).
53. Non-opioid drugs studied at the ARC included chlor-promazine (CPZ); reserpine; scopolamine; amphetamines; tryptamine; LSD, psilocybin, and mescaline.
54. Documentation was obtained through the Freedom of Information Act (FOIA) by investigative journalist J. P. Olsen. See also correspondence by Harris Isbell, 8 March 1954, A-87.
55. ARC Quarterly Report, A-112.
56. Harris Isbell, Richard E. Belleville, H. Franklin Fraser, Abraham Wikler and C. R. Logan, 'Studies on Lysergic Acid Diethylamide (LSD-25): I. Effects in Former Morphine Addicts and Development of Tolerance During Chronic Intoxication', AMA Archives of Neurology and Psychiatry, 1956, 76, 468-78.
57. Isbell, 8 March 1954, A-87.
58. Harold A. Abramson, Murray E. Jarvik, M. R. Kaufman, Conan Kornetsky, A. Levine and M. Wagner, 'Lysergic acid diethylamide (LSD-25): I. Physiological and perceptual responses', Journal of Psychology, 1955, 39, 3-60.
59. Isbell et al., 'Studies on Lysergic Acid Diethylamide (LSD-25)', 468-9.
60. Harris Isbell and C. R. Logan, 'Studies on the Diethyl-amide of Lysergic Acid (LSD-25): II. Effects of Chlorpro-mazine, Azacyclonal, and Reserpine on theIntensityof the LSD-Reaction', AMA Archives of Neurology and Psychiatry, 1957, 77, 350-8.
61. Edward M. Flowers Oral History Interview, 2004, conducted by J. P. Olsen and Luke Walden. Used with permission.
62. CIA-funded LSD research occurred in 80 North American sites, including Edgewood Arsenal; Fort Detrick, Maryland; Fort Bragg, North Carolina; Fort McClellan, Alabama; Fort Benning, Georgia; and DugwayProving Ground, Utah, according toJonathan Moreno, Undue Risk: Secret State Experiments on Humans (New York: Routledge, 2001), 256.
63. See Jon M. Harkness, 'Research behindbars: ahistoryofnontherapeuticexperi-mentation on American prisoners' (PhD dissertation, University of Wisconsin-Madison, 2003), 218-30.
64. National Commission Report of Site Visit, 4.
65. The NIH Clinical Center officially opened in 1953, but the outdoor ribbon cutting ceremony reflected government deadlines rather than a finished interior. Scientists did not begin research inside the facility until 1954. Michele Lyons, 70 Acres of Science (Bethesda, MD: Office of NIH History, National Institutes of Health, 2006).
66. Angela N. H. Creager, Life Atomic: AHistoryofRadio-isotopes in Science and Medicine (Chicago, IL: University of Chicago Press, 2013)
67. Harry M. Marks, The Progress of Experiment: Science and Therapeutic Reform in the United States, 1900-1990 (Cambridge: Cambridge University Press, 1997)
68. Marcia Meldrum, 'Departures from the Design: The Randomized Clinical Trial in Historical Context, 1946-1970' (PhD dissertation, SUNY Stony Brook, 2000).
69. Laura Stark, 2012; S. M. Kohn, Jailed for Peace: The History of American Draft Law Violators, 1658-1985 (New York: Praeger, 1987).
70. M. Gingerich, Service for Peace: A History of Mennon-ite Civilian Public Service (Akron, PA: Mennonite Central Committee, 1949)
71. J. K. Kreider, A Cup o Cold Water: The Story o Brethren Service (Elgin, IL: Brethren Press, 2001).
72. Halpern, Lesser Harms; Lederer, Subjected to Science.
73. Leonard Glantz, 'The Influence of the Nuremberg Code on US Statutes and Regulations', in George J. Annas and Michael A. Grodin, eds, The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation (NewYork: Oxford University Press, 1992). [Author], 103-4.
74. Susan Lederer, 'Research withoutBorders: The Origins of the Declaration of Helsinki', in Roelcke and Maio, eds, Twentieth CenturyEthics o Human SubjectsRe-search: Historical Perspectives on Values, Practices, and Regulations (Stuttgart: Franz Steiner Verlag, 2004).
75. Frank Smith, '1,000th Prisoner Volunteer Admitted to Clinical Center', The NIH Record, 25 August 1964,16, 1,4).
76. J. Goodman, A. McElligottand Lara Marks, eds, Useful Bodies: Humans in the Service of Medical Science in the Twentieth Century (Baltimore: The Johns Hopkins University Press, 2003).
77. Renee C. Fox, Judith P. Swazey and J. C. Watkins, Observing Bioethics.
78. For excellent critical accounts, see Roger Cooter and C. Stein, Writing History in the Age of Biomedicine (New Haven, CT: Yale University Press, 2013)
79. Robert Martensen, 'The History of Bio-ethics: An Essay Review', Journal of the History of Medicine and Allied Sciences, 2001, 56, 168-75.
80. Catharine Bliss, 'Translating Racial Genomics: Passages in and Beyond the Lab', Qualitative Sociology, 2013, 36, 423-43
81. Steven Epstein, Inclusion: The Politics of Difference in Medical Research (Chicago: University of Chicago Press, 2007)
82. Jennifer Reardon, 'On the Emergence of Science and Justice', Science, Technology, & Human Values, 2005, 38, 176-200
83. John H. Evans, Playing God? Human Genetic Engineer-ing and the Rationalization of Public Bioethical Debate (Chicago: University of Chicago Press, 2002).
84. Research with Prisoners, 23 August 1974. 45CFR46.
85. Draft report, 3 Feb. 1976,3. Folder: Meeting 39,10-11 Feb. 1978. Box 10. National Commission collection. Kennedy Institute of Ethics. Georgetown University, Georgetown, Washington, DC.
86. Flowers was also the sole subject interviewed byjour-nalistJohn Marks for his 1991 book.
87. Hearings may be viewed at accessed 14 March 2015.
88. On the concept of 'indigenous moralities' of experimental settings, see Halpern, Lesser Harms, 9-10.
89. This theme is apparent throughout interviews with physicians and clinical researchers trained at the ARC. For instance, see the interview with Charles Gorodetzky, accessed 16 March 2015.
90. The interviews participants were Evelyn Bertsche, Richard Cope, Walter Dale Horst, Melvin Lehman, Jackie Small, Martha Wedel and Wilmer Wedel. All interviews were conducted bythe author in 2011.
91. M. Gingerich, Service forPeace:AHistoryofMennon-ite Civilian Public Service (Akron, PA: Mennonite Central Committee, 1949), vi-vii.
92. Howard Simons, 'They volunteer to suffer', Saturday Evening Post, March 26, 1960, 33.
93. Herzig, Suffering for Science
94. Lederer, Subjected to Science
95. Martin S. Pernick, A Calculus of Suffering: Pain, Professionalism, and Anesthesia in Nineteenth-Century America (New York: Columbia University Press, 1985).
96. Emily K. Wilson, 'ExUtero: Live Human Fetal Research and the Films of Davenport Hooker', Bulletin of the History of Medicine, 2014, 88, 132-60.