The Tuskegee syphilis study raised serious concerns about ethical research because the researchers

The Tuskegee Syphilis Study was initiated because known treatments for syphilis, in 1932, had shown little demonstrated effect, in addition to being toxic and dangerous.

The dependent variable in the Tuskegee Experiment (the knowledge researchers wanted), was whether persons with syphilis were, in fact, better off without the treatment.

We now know that syphilis is curable just treating it with penicillin.

The study is well known, because of the tragedy it caused for many people and also because of the sheer lack of ethical consideration shown by the scientists concerned.

The subjects (participants) were mostly illiterate blacks from Tuskegee, Alabama (USA).

Syphilis is a sexual transmitted disease. It can lead to a range of painful, chronic and deadly symptoms, such as infection in the nerve-system, or cardiovascular-complications.

Unethical Study

There are 6 main points which are regarded as highly unethical in the study:

1. There was no informed consent.
2. The participants were not informed of all the known dangers.
3. The participants had to agree to an autopsy after their death, in order to have their funeral costs covered.
4. Scientists denied treatment to some patients, in order to observe the individual dangers and fatal progression of the disease.
5. Participants were not given the cure, even when it was widely known and easily available.
6. The designers used a misleading advertisement: The researchers advertised for participants with the slogan; "Last Chance for Special Free Treatment". The subjects were NOT given a treatment, instead being recruited for a very risky spinal tap-diagnostic.

At the beginning of the study, the subjects were not well informed about the whole purpose of the research; neither were they informed of the inherent dangers of the study. The experiment was at the time seen as potentially beneficial for the humankind, but did not consider the harm caused to individuals and their families.

By 1947, Penicillin had become the standard treatment for curing syphilis. Instead of performing the necessary duty; closing the study and giving all of the subjects some penicillin, the scientists of Tuskegee Syphilis Study withheld treatment from many of the participants. The scientists did not follow the commonly used ethical rules of research.

The study ended in 1972, 25 years after the cure was known and publicly available.

By the end of the study, 28 persons had died from the disease, 100 persons had died from related diseases and 40 wives and 19 children had been infected with syphilis.

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2. G. Bohme, “Rationalizing Unethical Research: Taking Seriously the Case of Viktor Von Weizsacker,” in Dark Medicine, 15–29.

3. LaFleur, “Introduction.”.

4. J. H. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York, NY: Free Press, 1981), 1–15.

5. R. M. White, “Unraveling the Tuskegee Study of Untreated Syphilis,” Archives of Internal Medicine 160, no. 5(2000): 585–598; R. M. White, “Misrepresentations of the Tuskegee Study of Untreated Syphilis,” Journal of the National Medical Association 97, no. 12 (2005): 1729–1731; R. A. Shweder, “Tuskegee Re-examined: A Cultural Anthropologist Offers a Counter-narrative to the Infamous Story of US Government Scientists Allowing Black Men to Suffer from Untreated Syphilis,” Spiked January 8, 2004, http://www.spiked-online.com/Articles/0000000CA34A.htm (accessed April 17, 2012)

6. A. V. Campbell, “A Report from New Zealand: An ‘Unfortunate Experiment,’” Bioethics 3, no. 1 (1989): 59–66. [PubMed]

7. S. Coney. The Unfortunate Experiment: The Full Story Behind the Inquiry Into Cervical Cancer Treatment (Auckland, New Zealand: Penguin Books NZ Ltd, 1988).

8. J. Corbett, “Second Thoughts on the Unfortunate Experiment at National Women’s”, Metro Magazine, July 1990, 54–73.

9. Now, with severe dysplasia, defined as cervical intraepithelial neoplasia 3 (CIN3).

10. L. Bryder, A History of the “Unfortunate Experiment” at National Women’s Hospital (Auckland, New Zealand: Auckland University Press, 2009); L. Bryder, Women’s Bodies and Medical Science (Basingstoke, UK: Palgrave McMillan, 2010); L. Bryder, The Rise and Fall of National Women’s Hospital, a History (Auckland, New Zealand: Auckland University Press, 2014).

11. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington, DC: US Dept of Health, Education, and Welfare, 1979). [PubMed]

12. S. R. Cartwright, The Report of the Cervical Cancer Inquiry: The Report of the Committee of Inquiry into Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital and Into Other Related Matters (Wellington, New Zealand: Government Printer, 1988). (Also known as the Cartwright Inquiry.)

13. J. B. Nie and L. Anderson, “Bioethics in New Zealand: A Historical and Sociological Review,” in Annals of Bioethics, ed. J. F. Peppin and M. J. Cherry (Lisse, the Netherlands: Swetz and Zeitlinger, 2003), 341–361.

14. “Clearing the Myths of Time: Tuskegee Revisited,” Lancet Infectious Diseases 5, no. 3 (2005), 127. [PubMed]

15. L. Bryder, “A Response to Criticisms of the History of the ‘Unfortunate Experiment’ at National Women's Hospital,” New Zealand Medical Journal 123, no. 1319 (2010): 14–21. [PubMed]

16. R. W. Carrell, “Trial by Media,” Notes and Records of the Royal Society of London 66, no. 3 (2012): 301–306.

17. C. Barton, “An Unfortunate Fallout: Academics Against Bryder’s Revisionist History,” New Zealand Herald, September 19, 2009, B2; B. Brookes, “The Making of a Controversy: History, Medicine and Politics,” in The Cartwright Papers: Essays on the Cervical Cancer Inquiry 1987–88, ed. J. Manning (Wellington, New Zealand: Bridget Williams Books, 2009), 100–117; S. Coney, “The Unfortunate History,” in Cartwright Papers, 139-148; C. Barton, “No Accounting for Mistakes,” New Zealand Herald, July 17, 2010, B6. For complaints to the publisher, see “Facts About the Cartwright Inquiry: The University of Auckland,” http://www.cartwrightinquiry.com/?page_id=31 (accessed April 7, 2014)

18. US Dept of Health and Human Services, “Fact Sheet on the 1946–1948 US Public Health Service Sexually Transmitted Diseases Inoculation Study,” available at: http://www.hhs.gov/1946inoculationstudy/factsheet.html (accessed March 6, 2015)

19. S. M. Reverby, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy (Chapel Hill: University of North Carolina Press; 2009), 233.

20. US Dept of Health, Education, and Welfare, Final Report of the Tuskegee Syphilis Study Ad Hoc Advisory Panel (Washington, DC: US Government Printing Office, 1973); Tuskegee Syphilis Study Legacy Committee, “Legacy Committee Request,” in Tuskegee Truths: Rethinking the Tuskegee Syphilis Study, ed. S. M. Reverby (Chapel Hill, NC: University of North Carolina Press, 2000), 559–566; “President William C. Clinton’s Remarks,” in Tuskegee Truths, 574–577; Cartwright, Report of the Cervical Cancer Inquiry.

21. Cartwright, Report of the Cervical Cancer Inquiry, 21.

22. G. H. Green, “Cervical Carcinoma In Situ,” Australian and New Zealand Journal of Obstetrics and Gynaecology 10, no.1 (1970), 41. [PubMed]

23. G. H. Green, “The Progression of Pre-Invasive Lesions of the Cervix to Invasion,” New Zealand Medical Journal 80, no. 525 (1974): 279–827; R. W. Jones and M. R. McLean, “Carcinoma In Situ of the Vulva: A Review of 31 Treated and Five Untreated Cases,” Obstetrics and Gynaecology 68 (1986): 499–503; Cartwright, Report of the Cervical Cancer Inquiry, 114.

24. US Dept of Health, Education, and Welfare, Final Report of the Tuskegee Syphilis Study, 9-10; Cartwright, Report of the Cervical Cancer Inquiry, 50.

25. US Dept of Health, Education, and Welfare, Final Report of the Tuskegee Syphilis Study, 10–11; Cartwright, Report of the Cervical Cancer Inquiry, 70–88.

26. J. Heller, “Syphilis Victims in U.S. Study Went Untreated for 40 Years,” in Tuskegee Truths, 116–118; P. Bunkle and S. Coney, “An Unfortunate Experiment at National Women’s Hospital,” Metro Magazine, June, 1987, 46–65.

27. F. Gray, “The Lawsuit,” in Tuskegee Truths, 473–488. In New Zealand the Accident Compensation Commission paid compensation.

28. Green wrote, “close follow-up is not mentally traumatic to patients treated conservatively even to those with persistently positive smears—providing one can speak to the patient with confidence.” (Green, “Cervical Carcinoma In Situ,” 43.)

29. Cartwright, Report of the Cervical Cancer Inquiry, 54–55.

30. Jones, Bad Blood, 61–77.

31. Reverby, Examining Tuskegee, 91–100.

32. C. Paul, “Defenses of the Tuskegee Syphilis Study: Assessment of Empirical Claims.” Working Paper, July 17, 2015, http://www.otago.ac.nz/dsm/people/expertise/profile/?id=633 (accessed July21, 2015); C. Paul, “The Medical Context,” in Cartwright Papers, 118–38.

33. R. M. White, “The Tuskegee Study of Untreated Syphilis Revisited,” Lancet Infectious Diseases 6, no. 2 (2006): 62–63; “Clearing the Myths of Time: Tuskegee Revisited,” Lancet Infectious Diseases 5, no. 3 (2005), 127; White, “Misrepresentations of the Tuskegee Study”; Bryder, History of the “Unfortunate Experiment,” 40.

34. J. E. Moore et al., “Latent Syphillis: Cooperative Clinical Studies in the Treatment of Syphilis,” Venereal Disease Information 13 (1932): 351–364; J. E. Moore et al., “Latent Syphilis: Cooperative Clinical Studies in the Treatment of Syphilis,” Venereal Disease Information 14(1933):1–56.

35. J. E. Moore, The Modern Treatment of Syphilis [textbook, 1933], cited in “Racism and Research: The Case of the Tuskegee Syphilis Study,” Hastings Center Report 8 (1978): 21–29. For more detail, see Paul, “Defenses of the Tuskegee Syphilis Study: Assessment of Empirical Claims.”.

36. L. A. Altshuler et al., “The Status of Penicillin in the Treatment of Syphilis, December 1, 1947,” Journal of the American Medical Association 136, no. 13(1948): 873–879. [PubMed]

37. Venereal Disease Education Institute, Diagnosis and Treatment of Syphilis: A Handbook for Physicians (Raleigh, NC: Venereal Disease Division, US Public Health Service, 1948).

38. VD Fact Sheet. No. 10 (Washington, DC: US Public Health Service, 1953), 20; VD Fact Sheet. (Washington, DC: US Public Health Service, 1960), 19.

39. E. G. Knox, “Cervical Cytology: A Scrutiny of the Evidence,” in Problems and Progress in Medical Care: Essays on Current Research, Second Series, ed. G. McLachlan (London, UK: Oxford University Press, 1966), 279–309.

40. A. I. Spriggs, “Precancerous States of the Cervix Uteri,” in Precancerous States, ed. R. L. Carter (London, UK: Oxford University Press, 1984), 317–355.

41. P. Kolstad and V. Klem, “Long-Term Followup of 1121 Cases of Carcinoma In Situ,” Obstetrics and Gynecology 48 (1976): 125–129; F. E. Bryans et al., “The Cytology Program in British Columbia Part II. Management of Preclinical Carcinoma of the Cervix,” Canadian Medical Association Journal 90 (1964):62-70.

42. White, “Unraveling the Tuskegee Study,” 595.

43. H. L. Blum and C. W. Barnett, “Prognosis in Late Syphilis,” Archives of Internal Medicine (Chicago) 82, no. 4 (1948): 393. [PubMed]

44. Paul, “Defences of the Tuskegee Syphilis Study.”.

45. Bryder, History of the “Unfortunate Experiment,” 44, 46.

46. J. E. MacGregor and S. Teper, “Uterine Cervical Cytology and Young Women,” Lancet 311, no. 8072 (1978): 1029–1031. [PubMed]

47. R. M. Richart and B. A. Barron, “A Follow-Up Study of Patients With Cervical Dysplasia,” Amercian Journal of Obstetrics and Gynecology 105, no 3 (1969): 386–393. [PubMed]

48. Shweder, “Tuskegee Re-Examined.”.

49. R. A. Vonderlehr et al., “Untreated Syphilis in the Male Negro: A Comparative Study of Treated and Untreated Cases,” Journal of the American Medical Association 107, no. 11 (1936): 859.

50. Bryder, History of the “Unfortunate Experiment,” 197. Confusingly, Green used “conservatively treated” to describe what he elsewhere called “untreated or incompletely treated.” See G. H. Green and J. W. Donovan, “The Natural History of Cervical Carcinoma In Situ,” Journal of Obstetrics and Gynaecology of the British Commonwealth 77, no. 1 (1970): 1–9. Normally the term is used to denote treatment that removes the lesion but conserves the uterus, e.g., cone biopsy and local methods to remove the lesion.

51. Bryder, History of the “Unfortunate Experiment,” 43. [PubMed]

52. G. H. Green, “The Progression of Pre-invasive Lesions of the Cervix to Invasion,” New Zealand Medical Journal 80, no. 525 (1974): 279–287; W. A. McIndoe et al., “The Invasive Potential of Carcinoma In Situ of the Cervix,” Obstetrics and Gynecology 64, no. 4 (1984): 451–458; Cartwright, Report of the Cervical Cancer Inquiry, 235.

53. Cartwright, Report of the Cervical Cancer Inquiry, 42-46.

54. M. R. McCredie et al., “Consequences in Women of Participating in a Study of the Natural History of Cervical Intraepithelial Neoplasia 3,” Australian and New Zealand Journal of Obstetrics and Gynaecology 50, no. 4 (2010): 363–370. The incidence of invasive cancer was 10 times as high among the women who received only a punch or wedge biopsy as among women who received a cone biopsy or hysterectomy; almost all the deaths from cervical or vaginal vault cancer were among the former group.

55. D. T. Rodgers, Age of Fracture (Cambridge, MA: Belknap Press of Harvard University Press, 2011); T. Eagleton, After Theory (London, UK: Penguin Books, 2004).

56. Rodgers, Age of Fracture, 176.

57. White, “Unraveling the Tuskegee Study,” 597.

58. L. Bryder, “National Women’s,” New Zealand Listener, April 26, 2014, 6.

59. Coney, “Unfortunate History,” 146.

60. R. V. Katz et al., “The Legacy of the Tuskegee Syphilis Study: Assessing Its Impact on Willingness to Participate in Biomedical Studies. Journal of Health Care for the Poor and Underserved 19, no. 4 (2008): 1168–1180. [PMC free article] [PubMed]

61. M. R. Golden, C. M. Marra, and K. K. Holmes, “Update on Syphilis: Resurgence of an Old Problem,” Journal of the American Medical Association 290 (2003): 1510–1514; M. R. McCredie et al., “Natural History of Cervical Neoplasia and Risk of Invasive Cancer in Women With Cervical Intraepithelial Neoplasia 3: A Retrospective Cohort Study,” Lancet Oncology 9, no. 5(2008): 425–434.

62. Cartwright, Report of the Cervical Cancer Inquiry, 1.

63. I. Chalmers, “Defendants of the Cartwright Inquiry Are Unable to Provide a Description of 'Adequate Care' for Cervical Carcinoma In Situ,” New Zealand Medical Journal 123, no. 1322 (2010), 86. [PubMed]

64. Quoted in C. Paul, “Internal and External Morality of Medicine: Lessons From New Zealand,” BMJ 320, no. 7233 (2000), 500. [PMC free article] [PubMed]

65. J. Corbett, “Have You Been Burned at the Stake Yet?” Metro Magazine, October, 1990, 156–165.

66. Reverby, Examining Tuskegee, 119.

67. US Dept of Health, Education, and Welfare, Final Report of the Tuskegee Syphilis Study, 14.

68. Cartwright, Report of the Cervical Cancer Inquiry, 136.

69. Shweder, “Tuskegee Re-Examined.”.

70. “Clearing the Myths of Time.”.

71. Bryder, A History of the “Unfortunate Experiment,” 69.

72. Shweder, “Tuskegee Re-examined.”.

73. Bryder, A History of the “Unfortunate Experiment,” 62.

74. R. R. Faden, T. L. Beauchamp, and N. M. King, A History and Theory of Informed Consent (New York: Oxford University Press, 1986); S. E. Lederer, Subjected to Science: Human Experimentation in America Before the Second World War (Baltimore, MD: Johns Hopkins University Press, 1995).

75. Lederer, Subjected to Science, 75.

76. Ibid, 123.

77. J. Vollman and R. Winau, “Informed Consent in Human Experimentation Before the Nuremberg Code,” BMJ. 313, no. 7070 (1996): 1445–1449. [PMC free article] [PubMed]

78. J. R. Williams, “The Declaration of Helsinki and Public Health,” Bulletin of the World Health Organization 86, no. 8 (2008): 650–652; Bryder, A History of the “Unfortunate Experiment,” 69. [PMC free article] [PubMed]

79. Williams, “The Declaration of Helsinki and Public Health,” 650. [PMC free article] [PubMed]

80. E. D. Pellegrino, “The Medical Profession as a Moral Community,” Bulletin of the New York Academy of Medicine 66, no. 3 (1990), 226. [PMC free article] [PubMed]

81. Quoted in Reverby, Examining Tuskegee, 70.

82. Quoted in Reverby, Examining Tuskegee, 75.

83. Cartwright, Report of the Cervical Cancer Inquiry, 70–75.

84. McIndoe, “Invasive Potential of Carcinoma In Situ of the Cervix.”. [PubMed]

85. Brandt, “Racism and Research,” Brookes, “Making of a Controversy.”.

86. Shweder, “Tuskegee Re-examined.” Even this point is uncertain. In 1938 Vonderlehr wrote, “Adequate treatment [for syphilis] has not been freely available to most indigent people for more than ten to twelve years.” R. A. Vonderlehr, “A Comparison of Treated and Untreated Syphilis: The Efficacy of Modern Antisyphilitic Treatment,” Annual Bulletin John A Andrew Clinic 1 (1938): 41–52.

87. D. J. Rothman, “Were Tuskegee & Willowbrook ‘Studies in Nature’?” Hastings Center Report 12, no. 2 (1982): 5–7. [PubMed]

88. C. Taylor, Sources of Self: The Making of the Modern Identity (Cambridge, UK: Cambridge University Press, 1989).

89. H. Jonas, “Philosophical Reflections on Experimenting With Human Subjects,” Daedalus 98, no. 2 (1969): 219–247.

90. Reverby, Examining Tuskegee, 149.

91. A. L. Fairchild and R. Bayer, “Uses and Abuses of Tuskegee,” Science 284 (1999): 919–921; Paul, “Internal and External Morality of Medicine.”. [PubMed]

92. C. J. MacDonald, “The Contribution of the Tuskegee Study to Medical Knowledge,” Journal of the National Medical Association 66, no. 1 (1974), 6. [PMC free article] [PubMed]

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94. J. Glover, Humanity: A Moral History of the Twentieth Century (New Haven, CT: Yale University Press, 2001), 393.

95. S. R. Benatar, “Reflections and Recommendations on Research Ethics in Developing Countries,” Social Science and Medicine 54, no. 7 (2002): 1131–1141. [PubMed]