A Legacy of Mistrust: African-Americans, the Medical Profession, and AIDS

References

• The Tuskegee Syphilis Study will be discussed in more depth later in this paper. For a more detailed analysis of the Tuskegee Syphilis Study, see James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment - A Tragedy ofRace and Medicine (New York: The Free Press, 1981).
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• Allan Brandt, “Racism and Research: The Case of the Tuskegee Syphilis Study”, Hastings Center Report 8 (December 1978): 23,27.
   Google Scholar
• Angie Cannon, “Officials Hope Apology for Tuskegee Study is a Healing Step”, The Philadelphia Inquirer,16 May 1997, A-I.
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• Other examples ofthe general disregard of the federal government toward those who are poor and vulnerable have come to light recently. First, from 1963 to 1971, at Oregon State Prison and at Washington State Prison, prisoners' testicles’ were irradiated to learn what doses made them sterile. Second, from 1946 to 1956, mentally handicapped children at the Walter E. Fernald State School in Waltham, Massachusetts were told that they were joining the “science club” and were given radioactive material in their cereals. Third, from 1945 to 1947, 820 pregnant women were given small doses ofradioactive iron at Vanderbilt University. Finally, during the 1960's and 1970's, subjects at the University of Cincinnati and three other universities were exposed to radiation over their entire bodies to measure the effects. For a more detailed analysis see Matthew L. Wald, “Rule Adopted to Prohibit Secret Tests on Humans”, The New York Times, 29 March 1997, A-I, 4; see also Ruth Faden, “The Advisory Committee on Human Radiation Experiments: Reflections on a Presidential Commission”, Hastings Center Report 26 (September-October 1996): 5-10.
   Google Scholar
• Patricia A. King, “The Dangers of Difference”, Hastings Center Report 22(November-December 1992): 36; see also Wafaa EI-Sadr and Linnea Capps, “The Challenge of Minority Recruitment in Clinical Trials for AIDS”, Journal ofthe American Medical Association 267 (1992): 954-957.
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• There are some within the African-American community who believe that this “legacy ofmistrust” is also why many African-Americans are less willing to donate blood and blood products, are less likely to donate organs, and have a fear oftheir children being vaccinated.
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• Gordon W. Allport &Leo Postman, The Psychology of Rumor(New York: Henry Holt, 1947), ix.
   Google Scholar
• Patricia A. turner, I Heard It Through the Grapevine: Rumor in African-American Culture, (Berkeley, CA: University ofCalifornia Press, 1993), 4.
   Google Scholar
• Ibid., 5.
   Google Scholar
• Allport and Postman make a case that legends are often little more than solidified rumors. See Allport and Postman, 167.
   Google Scholar
• Ibid., xv and 108.
   Google Scholar
• Ibid., 138.
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• Vanessa Gamble, “A Legacy of Distrust: African-Americans and Medical Research”, American Journal ofPreventative Medicine 9 (1993): 35.
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• Ibid. Physicians during the time ofslavery theorized that Africans had thicker skins, which allowed them to tolerate better the rays Qfthe sun. They also observed, in this case accurately, that black people seemed to be less susceptible than white people to some diseases, such as yelIow fever and malaria. In 1839 abolitionist Theodore Dwight Weld asserted, “ ’Public opinion' would tolerate surgical experiments, operations, processes, performed upon [slaves], which it would execrate if performed upon their masters or other whites.” Two antebellum experiments carried out in Georgia and Alabama confirm Weld's charge. In the first test, physician Dr. Thomas Hamilton conducted a series of brutal experiments on a slave to test remedies for heatstroke. The subject was loaned to Hamilton as repayment for the owner’s debt. The subject was forced to strip and sit on a stool on a platform placed in a pit that had been heated to a high temperature. Only his head was above ground. Over a period oftwo or three weeks, the man was placed in the pit five or six times and given different medications to determine which enabled him best to withstand the heat. Each ordeal ended when the subject fainted and had to be revived. The whole purpose of the experiment was to make it possible for masters to force slaves to work still longer hours on the hottest of days. In the second experiment, Dr. J. Marion Sims, the so-called father ofmodem gynecology, used three Alabama slave women to develop an operation to repair vesicovaginal fistulas. Between 1845 and 1849, the three slave women on whom Sims operated each underwent up to thirty painful operations. The physician himselfdescribed the agony associated with some ofthe experiments. Sims fmally did perfect his technique and ultimately repaired the fistulas. Only after his experimentation with the slave women proved successful did the physician attempt the procedure on white women volunteers. The slave women were forced to submit because the state considered them property and denied them the legal right to refuse to participate. For a more detailed analysis, see Ibid., 35-36. See also, T.D. Weld, American Slavery As It Is: Testimony ofa Thousand Witnesses (New York, 1939); F.N. Boone, Dr.Thomas Hamilton: Two Views ofa Gentleman ofthe OldSouth (Phylon, 1967); and J.M. Sims, The Story of My Life (New York: Appleton, lRRO) ......VJ ./"
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• For a more detailed analysis ofthe influence of the Paris school on American medicine, see Edwin Ackerknecht, Medicine at the Paris Hospital, 1794-/848 (Baltimore, MO, 1967); Richard Shryock, The Development ofModern Medicine: An Interpretation of the Social and Scientific Factors Involved (New York, 1947); Michel Foucault, The Birth ofthe Clinic: An Archeology of Medical Perception (New York, 1973); and Gerald Grob, Edward Garvis and the Medical World of Nineteenth-Century America (Knoxville, TN, 1978).
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• Todd Savitt, “The Use of Blacks for Medical Experimentation and Demonstration in the Old South”, The Journal ofSouthern History 48 (J 982): 332-333.
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• Ibid., 333.
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• Gladys-Marie Fry, Night Riders in Black Folk History )Athens, GA: University of Georgia Press, 1991), 174-175. Emphasis in the original. Another advertisement appearing in The Charleston Mercury gives supporting evidence that Charleston many have been a busy center for traffic in slave bodies. In this advertisement, Dr. T. Stillman, in the interest of improved medical techniques, decided to operate his own infirmary stocked with slaves having interesting and unusual diseases. The advertisement states: “To Planters and Others - Wanted fifty negroes. Any person having sick negroes, considered incurable by their respective physicians, and wishing to dispose of them, Dr. S. will pay cash for negroes affected with scrofula or king's evil, confirmed hypocondriasm, apoplexy, diseases of the liver, kidneys, spleen, stomach and intestines, bladder and its appendages, diarrhea, dysentery, etc. The highest price will be paid on application as above.” Ibid.
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• Ibid., 176. See also Allan Guttmacher, “Bootlegging Bodies”, Society of Medical History ofChicago 4 (January 1935): 353-402.
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• Ibid., 171. According to Fry, “night doctors” were also known to blacks as “student doctors” (referring specifically to apprentice physicians), “Ku Klux doctors”, “night witches”, and “night riders”. The apparel of these “night doctors” ranged from white robes or suits, black robes or suits, to plain clothes. The kinds ofvictims sought fit into two distinct categories. First, the “night doctors” preyed on the helpless because they offered less resistance to capture. These included the aged, infirmed, drunk, and physically disabled. The second category consisted of those who had special medical problems, such as those who were deformed, excessively fat, or of some unusual height. There were also two methods of ensnarement. First, operating in pairs, the “night doctors” would capture people walking alone late at night. Or, they would lure people into especially designed street traps, from which no one emerged alive. The oral folklore tradition among the African-Americans contends that people who were captured by the “night doctors” were taken directly to hospitals, laboratories, or medical schools where their bodies were used for experimentation or dissection. Ibid., 188-199.
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• For a more detailed analysis ofthe black migration-to industrial centers, see “The Negro Migration of 1916-1918”, Journal of Negro History 6 (January 1921): 383-498.
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• Fry, 171. Fry confirms this beliefin a conversation with an informant named Fred Jackson on March 26, 1964. Mr. Jackson states: “The people that owned the farm in those days, why actually they would dress like that [as night doctors] to keep the fellows that worked in the farm and lived there, you know, and they would practically live there all oftheir life. And to keep them from leaving, they would dress like that to frighten them, to keep them from going away, leaving the farm going to the city.” Ibid.
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• David C. Hwnpbrey, “Dissection and Discrimination: The Social Origins of Cadavers in America, 1760-1915”, Bulletin ofthe New York Academy of Medicine 44 (1970): 822. Hwnpbrey also cites T.S. Sozinsky, “Grave-robbing and Dissection”, Penn Monthly 10 (1879): 216.
   Google Scholar
• Ibid., 823-824. See also F.C. Waite, “Grave Robbing in New England”, Bulletin ofthe Medical Library Association 33 (1945): 283-284; L.F. Edwards, “Dr. Frederick C. Waite's Correspondence With Reference to Grave Robbing, Part II”, Ohio State Medical Journal 54 (1958): 602.
   Google Scholar
• Hwnpbrey, 824. Humpbrey further states: “A 1913 survey of 55 medical schools revealed that a ’large majority'’ relied on almshouses as the ’sole or main’ source for their cadavers, while several schools depended chiefly on hospitals treating victims of tuberculosis, a disease that ravaged blacks and poor whites and killed more than 150,000 people annually at the turn of the century.” Ibid. see also, Bureau of Census, “Tuberculosis in the United States”, (Washington, D.C.: Government Printing Office, 1908): 18-19,60.
   Google Scholar
• Gamble, 36.
   Google Scholar
• Ibid., Gamble supports her position with two examples. First, Dr. Thomas W. Murrell noted in 1910, “Morality among these people is almost a joke and only assumed as a matter of convenience or when there is a lack of desire and opportunity for indulgence, and venereal diseases are well-nigh universal.” Second, Dr. H.H. Hazen echoes this sentiment: “The negro springs from a southern race, and as such his sexual appetite is strong; all of his environments stimulate this appetite, and as a general rule his emotional type ofreligion certainly does not decrease it.” Ibid. See also, T.W. Murrell, “Syphilis and the American Negro”, Journal ofthe American Medical Association 54 (1910): 847 and H.H. Hazen, “Syphilis in the American Negro”, Journal of the American Ml!uical Association 63 (1914): 463.
   Google Scholar
• In August, 1972, HEW appointed an investigatory panel which issued a report the following year. The panel found the study to have been “ethically unjustified” and argued that penicillin should have been provided. See Brandt, 21; and Ad Hoc Advisory Panel, Department ofHealth, Education, and Welfare. “Final report of the Tuskegee Syphilis Study”, (Washington, D.C.: Government Printing Office, 1973). For a more detailed analysis ofthe Tuskegee Syphilis Study, see Jones, Bad Blood: The Tuskegee Syphilis Experiment - A Tragedy ofRace and Medicine; Arthur Caplan, “When Evil Intrudes”, Hastings Center Report 22 (November-December 1992): 29-32; Harold Edgar, “Outside the Community”, Hastings Center Report 22 (November-December 1992): 32-35; Patricia A. King, “The Dangers of Difference”, Hastings Center Report 22 (November-December 1992): 35-38; and James H. Jones, “The Tuskegee Legacy: AIDS and the Black Community”, Hastings Center Report 22 (November-December 1992): 38-40.
   Google Scholar
• For a more detailed analysis of the impact of birth control on the African-American community, see R. G. Weisbord, “Birth Control and the Black American: A Matter of Genocide?”, Demography 10 (1973): 571-590.
   Google Scholar
• Norplant is the trade name for a birth control product consisting of six thin capsules that, upon being implanted in a woman’s ann, release an ovulation-inhibiting hormone. Turner, 221.
   Google Scholar
• Ibid., 222. See also, “One Well-Read Editorial”, Newsweek, 31 December 1990, 65-66; and “Poverty and Norplant”, Philadelphia Inquirer, 12 December 1990, A-18.
   Google Scholar
• For a more detailed analysis of the effects of race on medical care see, H. Jack Geiger, M.D., “Race and Health Care - An American Dilemma”, The New England Journal of Medicine 335 (1996): 815-816; and M.E. Gornick, P.W. Eggers, T.W. Reilly, et aI., “Effects ofRace and Income on Mortality and Use ofServices Among Medicare Beneficiaries”, New England Journal of Medicine 335 (1996): 791-799.
   Google Scholar
• For a more detailed analysis, see D.Y. Wilkenson, “For Whose Benefit? Politics and Sickle Cell”, The Black Scholar 5 (1974): 26-31; King, 37.
   Google Scholar
• Bonnie O’Connor, “Foundations of African-American Mistrust of the Medical Establishment”, (unpublished manuscript), Allegheny University Medical School, Philadelphia, PA, 10. See also, Curtis Cost, Vaccines are Dangerous: A Warning to the Black Community (Brooklyn, New York; A&B Books, 1991), 5.
   Google Scholar
• O'Connor, II.
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• A national survey, conducted by the Roper Starch Worldwide polling company, found that out of500 blacks, 18% said they believed AIDS was a man-made virus; 9% in the general population agreed. When asked more specifically whether HlV and AIDS were part of a plot to kill blacks, 9% of the all-black group said it was definitely true; compared to I% in the general group. See Lynda Richardson, “An Old Experiment’s Legacy: Distrust of AIDS Treatment” , The New York Times 21 April 1997, A-9.
   Google Scholar
• Gamble, 37. See also, S.B. Thomas and S.C. Quinn, “The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk education Programs in the Black Community”, American Journal ofPublic Health 81 (1991): 1499. In addition, a New York Times fWCBS news poll conducted in 1990 found that 10% of all black Americans thought the AIDS virus was “deliberately created in a laboratory in order to infect black people,” and 20% believed it could be true. The New York Times, 12 May 1992.
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• Turner, 158.
   Google Scholar
• Ibid., 160-161.
   Google Scholar
• Jones, “The Tuskegee Legacy,” 38.
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• It should be noted that the legacy of the Tuskegee Study and the conspiracy and contamination motifs have had an impact on other areas affecting the African-American community. Various needle exchange programs have been seen as a way to foment drug use among African-Americans. For a more detailed analysis, see D.L. Kirp and R. Bayer, ’Needles and Race’, Atlantic 38 (July 1993): 38-42. The conspiracy and contamination motifs have also been supported by the illegal drug trade. Rumors abound in the African-American community that illegal drugs, especially crack, are part ofa systematic genocidal conspiracy to eliminate African-Americans. See Turner, 181-201.
   Google Scholar
• Canon, A-I.
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• Dr. Stephen B. Thomas, interview by Peter A. Clark, S.J., 23 July 1997, phone interview, Director ofthe Institute ofMinority Health Research at Emory University’s Rollins School ofPublic Health, Atlanta, GA. It should be noted that the margin of sampling error was plus or minus 4%. See also, Richardson, A-9. For further statistics regarding why African-Americans are less interested in participating in health promotion and research because of the Tuskegee Syphilis Study, see Bernard Green, et aI., ’Participation in Health Education, Health Promotion, and Health Research by African-Americans: Effects of the Tuskegee Syphilis Experiment’, Journal of Health Education 28 (July-August 1997): 196-20I.
   Google Scholar
• For a more detailed analysis ofethnic differences in drug testing, see Paul Cotton, ’Examples Abound of Gaps in Medical Knowledge Because of Groups Excluded From Scientific Study", Journal ofthe American Medical Association 263 (1990): 1051; Mark D. Smith, ’Zidovudine: Does It Work for Everyone?” JAMA 266 (1991): 2751; and W. Kalow, H.W. Goedde, and D.P. Agarwal, eds., Ethnic Differences in Reactions to Drugs andXenobiotics (New York, NY: Alan Liss, Inc., 1986).
   Google Scholar
• Paul Cotton, ”Race Joins Host ofUnanswered Questions on Early HIV Therapy”, Journal of the American Medical Association 265 (1991): 1065. There is also increasing recognition ofevidence ofheightened resistance or vulnerability to disease along racial lines. See James E. Bowman and Robert Murray, Jr., Genetic Variation andDisorders in People of African Origin (Baltimore, MD: Johns Hopkins University Press, 1981); and Warren Leary, “Uneasy Doctors Add Race-Consciousness to Diagnostic Tools”, The New York Times, 15 September 1990.
   Google Scholar
• For a more detailed analysis, see C.K. Svensson, “Representation of American Blacks in Clinical Trials of New Drugs”, Journal of the American Medical Association 261 (1989): 263-265.
   Google Scholar
• Cotton, “Is There Still Too Much Extrapolation From Data on Middle-Aged White Men?”, Journal of the American Medical Association 63 (1990): 1050.
   Google Scholar
• Gamble, 37.
   Google Scholar
• It should be noted that a recent HBO special about the Tuskegee Syphilis Study entitled “Miss Evers’ Boys” has increased awareness about the Tuskegee story and has deepened the distrust the African-American community has for the medical establishment.
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• Alison Mitchell, “Survivors ofTuskegee Study Get Apology From Clinton”, The New York Times 17 May 1997, B-IO.
   Google Scholar
• Carol K. Yoon, “Families Emerge as Silent Victims of Tuskegee Syphilis Experiment”, The New York Times, 12 May 1997, B-8.
   Google Scholar
• V. Navarro, “Race or Class Versus Race and Class: Mortality Differentials in the United States”, Lancet 336 (1990): 1238-1240. Recent studies have shown that African-Americans have been treated poorly when treated for a problem, having to wait longer for treatments, spend less time with the doctor, and are not treated as aggressively as their white counterparts. See, D.R. Williams, R. Lavizzo-Mourey, & R.C. Warren, “The Concept ofRace and Health Status in America”, Public Health Reports 109 (1994): 26-41. It is interesting to note that a 1995 report by the Board of Trustees ofthe American Medical Association found that a search ofthe literature on racial and ethnic disparities in health care, covering only the 10-year period 1984 to 1994 and restricted to articles, commentaries, and letters in the New England Journal ofMedicine and the Journal ofthe American Medical Association filled 66 single-spaced pages. See, Board of Trustees Report 50-1-95 (Chicago, IL: American Medical Association, November 1995).
   Google Scholar
• Geiger, 816.
   Google Scholar
• Ibid., see also, C.K. Lum and S. G. Korenman, “Cultural-Sensitivity Training in U.S. Medical Schools, ” Academic Medicine 69 (1994): 239-241 .
   Google Scholar
• Turner, 219.
   Google Scholar
• Brandt, 27.
   Google Scholar
• Green, et aI, 200.
   Google Scholar
• Kevin Pleasant, interview by Peter A. Clark, S.1., 24 June 1997, phone interview, Philadelphia FIGHT, Philadelphia, PA.
   Google Scholar
• An example of this would be the $25 million given annually by the New York Health Deparbnent to minority community organizations to help dispel the suspicions and fears the minority community has toward the medical establishment.
   Google Scholar
• Jon Fuller, “AIDS Prevention: A Challenge to the Catholic Moral Tradition”, America 175 (December 28, 1996): 14.
   Google Scholar
• Brandt, 27.
   Google Scholar
• Lawrence Altman, “AIDS Drop 19% in U.S., Continuing a Heartening Trend”, The New York Times, 7 July 1997, A-14.
   Google Scholar