Preferred Citation: Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley:  University of California Press,  c1996 1996. http://ark.cdlib.org/ark:/13030/ft1s20045x/


 
Notes

Notes

Introduction Controversy, Credibility, and the Public Character of Aids Research

1. Elizabeth Pincus, "Harvard Medical Establishment Ripped by ACT UP/ Boston," Gay Community News, 11 September 1988, 1.

2. On credibility in science, see Steven Shapin, "Cordelia's Love: Credibility and the Social Studies of Studies," Perspectives on Science 3, no. 3 (1995): 255-275; Steven Shapin, A Social History of Truth: Civility and Science in Seventeenth-Century England (Chicago: Univ. of Chicago Press, 1994); Barry Barnes and David Edge, "Science as Expertise," in Science in Context: Readings in the Sociology of Science, ed. Barry Barnes and David Edge (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1982), 233-249; Bruno Latour and Steve Woolgar, Laboratory Life: The Construction of Scientific Facts (Princeton, N.J.: Princeton Univ. Press, 1986), chapter 5; Brian Martin, Scientific Knowledge in Controversy: The Social Dynamics of the Fluoridation Debate (Albany: State Univ. of New York Press, 1991), chapter 4; Susan Leigh Star, Regions of the Mind: Brain Research and the Quest for Scientific Certainty (Stanford: Stanford Univ. Press, 1989), 138-144; Rob Williams and John Law, "Beyond the Bounds of Credibility," Fundamenta Scientiae 1 (1980): 295-315. My conception of credibility bears an affinity to Susan Cozzens's definition of scientific power as enrollment capacity plus legitimacy. See Susan E. Cozzens, "Autonomy and Power in Science," in Theories of Science in Society, ed. Susan E. Cozzens and Thomas F. Gieryn (Bloomington: Indiana Univ. Press, 1990), 164-184, esp. 168-174.

3. See Michel Foucault, Discipline and Punish: The Birth of the Prison (New York: Vintage Books, 1979), 26.

4. Adele E. Clarke, "Controversy and the Development of Reproductive Science," Social Problems 37 (February 1990): 18-37, esp. 30.

5. On the historical constitution of the expert/lay divide, see Steven Shapin, "Science and the Public," in Companion to the History of Modern Science, ed. R. C. Olby et al. (London and New York: Routledge, 1990), 990-1007.

6. See Jürgen Habermas, Toward a Rational Society: Student rotest, Science, and Politics (Boston: Beacon Press, 1970), 62-80.

7. Dorothy Nelkin, "The Political Impact of Technical Expertise," Social Studies of Science 5 (February 1975): 35-54, quote from 54. See also Steven Brint, In an Age of Experts: The Changing Role of Professionals in Politics and Public Life (Princeton, N.J.: Princeton Univ. Press, 1994), 15.

8. U.S. opinion polls suggest that public confidence in science and medicine declined in the 1960s and 1970s and stabilized in the 1980s. However, these declines were no more marked than those for most other professions, all of which suffered from a "confidence gap" during this time. See Seymour Martin Lipset and William Schneider, The Confidence Gap: Business, Labor, and Government in the Public Mind (New York: Free Press, 1983).

9. For summaries of various critiques of science, see Robert N. Proctor, Value-Free Science? Purity and Power in Modern Knowledge (Cambridge, Mass.: Harvard Univ. Press, 1991, 232-261); Stanley Aronowitz, Science as Power (Minneapolis: Univ. of Minnesota Press, 1988), chapter 1; Sandra Harding, The Science Question in Feminism (Ithaca: Cornell Univ. Press, 1986).

10. Foucault, Discipline and Punish; Jean Baudrillard, Selected Writing (Stanford, Calif.: Stanford Univ. Press, 1988); Jean-François Lyotard, The Postmodern Condition: A Report on Knowledge (Minneapolis: Univ. of Minnesota Press, 1984).

11. Harry Collins and Trevor Pinch, The Golem: What Everyone Should Know about Science (Cambridge, England: Cambridge Univ. Press, 1993), 142.

12. For a recent discussion, see Charles E. Rosenberg, "Disease and Social Order in America: Perceptions and Expectations" in AIDS: The Burdens of History, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1988), 12-32.

13. Paul Starr, The Social Transformation of American Medicine (New York: Basic Books, 1982), 4. In Jürgen Habermas' terms, doctors stand at the boundary between "system" and "lifeworld."

14. Ibid., esp. 9-13, 59.

15. Ibid., 336.

16. See, for example, John Ehrenreich, ed., The Cultural Crisis of Modern Medicine (New York: Monthly Review Press, 1978); Barbara and John Ehrenreich, The American Health Empire (New York: Vintage Books, 1971).

17. Jay Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984), xv.

18. David J. Rothman, Strangers at the Bedside (New York: Basic Books 1991), 85-100.

19. Stephen O. Murray and Kenneth W. Payne, "Medical Policy without Scientific Evidence: The Promiscuity Paradigm and and AIDS," California Sociologist 11 (winter-summer 1988): 13-54, esp. 14.

20. Yaron Ezrahi, "The Authority of Science in Politics," in Science and Values: Patterns of Tradition and Change, ed. Arnold Thackray and Everett Mendelsohn (New York: Humanities Press, 1974), 215-251, quote from 220. See also Yaron Ezrahi, The Descent of Icarus: Science and the Transformationof Contemporary Democracy (Cambridge, Mass.: Harvard Univ. Press, 1990).

21. Steven Shapin and Simon Schaffer, Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life (Princeton, N.J.: Princeton Univ. Press, 1985), 336, 343.

22. Thomas F. Gieryn, "Boundary Work and the Demarcation of Science from Non-Science: Strains and Interests in Professional Ideologies of Scientists," American Sociological Review 48 (December 1983): 781-795; Thomas F. Gieryn, "Boundaries of Science," in Handbook of Science and Technology Studies, ed. Sheila Jasanoff et al. (Thousand Oaks, Calif.: Sage, 1995), 393-443.

23. Philip J. Hilts, "Does Anybody Want to Lead N.I.H. If Job Lasts Only till Next Election?" New York Times, 8 September 1989, A-12. Wyngaarden had just stepped down as director of the NIH a few months before.

24. For defenses of scientific autonomy, see Robert K. Merton, "Science and the Social Order" in: Robert K. Merton, The Sociology of Science: Theoretical and Empirical Investigations (Chicago: Univ. of Chicago Press, 1973), esp. 257-60 (this article dates from 1938); Edward A. Shils, The Torment of Secrecy: The Background and Consequences of American Security Policies (New York: Free Press, 1956), 176-191. Subsequent, more skeptical scholarship has proposed that the defense of professional autonomy can serve to disguise the pursuit of professional power. However, for a critical perspective on science that in the end returns to an endorsement of scientific autonomy as the guarantor of progress, see Pierre Bourdieu, "The Specificity of the Scientific Field and the Social Conditions of the Progress of Reason," Social Science Information 14 (December 1975): 19-47.

25. On the AIDS activist repudiation of the "victim" designation, see Max Navarre, "Fighting the Victim Label," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 143-146.

26. Susan E. Cozzens and Edward J. Woodhouse, "Science, Government, and the Politics of Knowledge," in Handbook of Science and Technology Studies, ed. Sheila Jasanoff et al. (Thousand Oaks, Calif.: Sage, 1995), 533-553, quote from 538.

27. Michael Bury, "The Sociology of Chronic Illness: A Review of Research and Prospects," Sociology of Health & Illness 13 (December 1991): 451-468.

28. See Mark A. Chesler, "Mobilizing Consumer Activism in Health Care: The Role of Self-Help Groups," Research in Social Movements, Conflicts and Change 13 (1991): 275-305; Miriam J. Stewart, "Expanding Theoretical Conceptualizations of Self-Help Groups," Social Science and Medicine 31 (May 1990): 1057-1066; and the special issue of the American Journal of Community Psychology 19 (October 1991).

29. Gerald E. Markle and James C. Petersen, eds., Politics, Science, and Cancer: The Laetrile Phenomenon (Boulder, Colo.: Westview Press, 1980).

30. Sheryl Burt Ruzek, Feminist Alternatives to Medical Control (New York: Praeger, 1978), 144. See also Rima D. Apple, ed., Women, Health, andMedicine in America: A Historical Handbook (New Brunswick, N.J.: Rutgers Univ. Press, 1990 (including the extensive bibliography); Elizabeth Fee, ed., Women and Health: The Politics of Sex in Medicine (Farmingdale, N.Y.: Baywood, 1982); Boston Women's Health Book Collective, Our Bodies, Ourselves: A Book by and for Women (New York: Simon & Schuster, 1973).

31. Hilary Arksey, "Expert and Lay Participation in the Construction of Medical Knowledge," Sociology of Health & Illness 16 (September 1994): 448-468.

32. Rainald von Gizycki, "Cooperation between Medical Researchers and a Self-Help Movement: The Case of the German Retinitis Pigmentosa Society," in The Social Direction of the Public Sciences, ed. Stuart Blume et al. (Dordrecht, Holland: D. Reidel, 1987), 75-88.

33. Initially the syndrome was defined with reference to "risk groups," such as gay men, hemophiliacs, injection drug users, and (for a while) Haitians. More recently, as AIDS increasingly becomes a disease of the poor, there is a growing tendency to define the affected population by race or class.

34. Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (Englewood Cliffs, N.J.: Prentice-Hall, 1963).

35. On the importance of "resource mobilization" for social movements, see William A. Gamson, The Strategy of Social Protest, 2d ed. (Belmont, Calif.: Wadsworth, 1990); J. D. McCarthy and M. N. Zald, "Resource Mobilization and Social Movements: A Partial Theory," American Journal of Sociology 82 (May 1977): 1212-1241. For an analysis comparing the mobilization to confront the epidemic by lesbian and gay communities with that of African-American communities, see Cathy Jean Cohen, "Power, Resistance and the Construction of Crisis: Marginalized Communities Respond to AIDS" (Ph.D. diss., University of Michigan, 1993).

36. John D'Emilio, Sexual Politics, Sexual Communities: The Making of a Homosexual Minority in the United States, 1940-1970 (Chicago: Univ. of Chicago Press, 1983); Dennis Altman, The Homosexualization of America (Boston: Beacon Press, 1982); Barry D. Adam, The Rise of a Gay and Lesbian Movement (Boston: Twayne Publishers, 1987).

37. Jeffrey Escoffier, "The Politics of Gay Identity," Socialist Review, July-October 1985, 119-153.

38. See Ronald Bayer, Homosexuality and American Psychiatry: The Politics of Diagnosis (New York: Basic Books, 1981). On medicalization and demedicalization more generally, see Peter Conrad and Joseph W. Schneider, Deviance and Medicalization: From Badness to Sickness (St. Louis: C. V. Mosby, 1980).

39. See Jackie Winnow, "Lesbians Evolving Health Care: Cancer and AIDS," Feminist Review, summer 1992, 68-77; Amber Hollibaugh, "Lesbian Denial and Lesbian Leadership in the AIDS Epidemic: Bravery and Fear in the Construction of a Lesbian Geography of Risk," in Women Resisting AIDS: Feminist Strategies of Empowerment, ed. Beth E. Schneider and Nancy E. Stoller (Philadelphia: Temple Univ. Press, 1995), 219-230; Nancy Stoller, "Lesbian Involvement in the AIDS Epidemic: Changing Roles and Generational Differences," in Women Resisting AIDS (above), 270-285; Gena Corea, The Invisible Epidemic: The Story of Women and AIDS (New York: HarperCollins, 1992).

40. David S. Meyer and Nancy Whittier, "Social Movement Spillover," Social Problems 41 (May 1994): 277-298.

41. On "micro-mobilization contexts" and their role in social movement organizing, see D. McAdam, J. D. McCarthy, and M. N. Zald, "Social Movements," in Handbook of Sociology, ed. Neil Smelser (Newbury Park, Calif.: Sage, 1988), 695-737, esp. 709-716; Clarence Y. H. Lo, "Communities of Challengers in Social Movement Theory," in Frontiers in Social Movement Theory, ed. Aldon D. Morris and Carol McClurg Mueller (New Haven: Yale Univ. Press, 1992), 224-247. Those suffering from diseases more randomly distributed in the population have had only the hospital itself as a micromobilization context; see Chesler, "Mobilizing Consumer Activism."

42. Pierre Bourdieu, The Logic of Practice (Stanford, Calif.: Stanford Univ. Press, 1990), 122-134. On the cultural roots of social movements, see also Doug McAdam, "Culture and Social Movements," in New Social Movements: From Ideology to Identity, ed. Enrique Laraña, Hank Johnston, and Joseph R. Gusfield (Philadelphia: Temple Univ. Press, 1994), 36-57.

43. See Antonio Gramsci, Selections from the Prison Notebooks (New York: International Publishers, 1971), 3-23.

44. See Dorothy Nelkin, The Creation Controversy: Science or Scripture in the Schools (New York: W. W. Norton, 1982), esp. 178-179.

45. For an analysis of the varying attitudes that social movements take toward experts and the various ways they approach them, see John Gaventa, "The Powerful, the Powerless, and the Experts: Knowledge Struggles in an Information Age," in Voices of Change: Participatory Research in the United States and Canada, ed. Peter Park et al. (Westport, Conn.: Bergin & Garvey, 1993), 21-40.

46. Phil Brown, "Popular Epidemiology and Toxic Waste Contamination: Lay and Professional Ways of Knowing," Journal of Health and Social Behavior 33 (September 1992): 267-281, quote from 269. For other relevant examples, see Giovanna Di Chiro, "Defining Environmental Justice: Women's Voices and Grassroots Politics," Socialist Review, October-December 1992, 93-130; Diana Dutton, "The Impact of Public Participation in Biomedical Policy: Evidence from Four Case Studies," in Citizen Participation in Science Policy, ed. James C. Petersen (Amherst: Univ. of Massachusetts Press, 1984), 147-181.

47. Cozzens and Woodhouse, "Science, Government, and the Politics of Knowledge," 547.

48. Ronald Bayer, "AIDS and the Gay Movement: Between the Specter and the Promise of Medicine," Social Research 52 (autumn 1985): 581-606.

49. The sociology of scientific knowledge is an important field within the broader domain known variously as science studies, science and technology studies, social studies of science, and so on. For some recent overviews and introductions to the sociology of scientific knowledge and/or the broader arena, see Steven Shapin, "Here and Everywhere: Sociology of Scientific Knowledge," Annual Review of Sociology 21 (1995): 289-321; Sheila Jasanoff et al., eds., Handbook of Science and Technology Studies (Thousand Oaks, Calif.: Sage, 1995); Adele E. Clarke and Joan H. Fujimura, "What Tools? Which Jobs? Why Right?" in The Right Tools for the Job: At Work in Twentieth-Century Life Sciences, ed. Adele E. Clarke and Joan H. Fujimura (Princeton, N.J.: Princeton Univ. Press, 1992), 3-44; Collins and Pinch, Golem; Susan E. Cozzens and Thomas F. Gieryn, "Introduction: Putting Science Back in Society," in Theories of Science in Society, ed. Susan E. Cozzens and Thomas F. Gieryn (Bloomington: Indiana Univ. Press, 1990), 1-14; Karin D. Knorr-Cetina and Michael Mulkay, "Introduction: Emerging Principles in Social Studies of Science," in Science Observed: Perspectives on the Social Study of Science, ed. Karin D. Knorr-Cetina and Michael Mulkay (London: Sage, 1993), 1-17; Andrew Pickering, "From Science as Knowledge to Science as Practice," in Science as Practice and Culture, ed. Andrew Pickering (Chicago: Univ. of Chicago Press, 1992), 1-26.

50. Shapin, "Here and Everywhere," 305.

51. See note 2 above.

52. Bruno Latour, Science in Action (Cambridge, Mass: Harvard Univ. Press, 1987). For an extension of this model to the construction of expertise, see Alberto Cambrosio, Camille Limoges, and Eric Hoffman, "Expertise as a Network: A Case Study of the Controversy over the Environmental Release of Genetically Engineered Organisms," in The Culture and Power of Knowledge: Inquiries into Contemporary Societies, ed. Nico Stehr and Richard V. Ericson (Berlin: Walter de Gruyter, 1992), 341-361.

53. See, in particular, Shapin, Social History of Truth.

54. Barry Barnes, About Science (Oxford: Basil Blackwell, 1985), 83.

55. Harry Collins, Changing Order: Replication and Induction in Scientific Practice, 2d ed. (Chicago: Univ. of Chicago Press, 1992), 130.

56. Shapin, Social History of Truth, 17; see also 52, n. 44.

57. See Stephen P. Turner, "Forms of Patronage," in Theories of Science in Society, ed. Susan E. Cozzens and Thomas F. Gieryn (Bloomington: Indiana Univ. Press, 1990), 185-211.

58. Shapin, Social History of Truth, 416. Shapin borrows the phrase "access points" from Anthony Giddens, The Consequences of Modernity (Stanford, Calif.: Stanford Univ. Press, 1989), 83.

59. Turner, "Forms of Patronage"; Chandra Mukerji, A Fragile Power: Scientists and the State (Princeton, N.J.: Princeton Univ. Press, 1989).

60. Naomi Aronson, "Science as a Claims-Making Activity," in Studies in the Sociology of Social Problems, ed. Joseph W. Schneider and John I. Kitsuse (Norwood, N.J.: Ablex Publishing, 1984), 1-30.

61. Gieryn, "Boundary Work"; Gieryn, "Boundaries of Science." On this point more generally, see Andrew Abbott, The System of Professions: An Essay on the Division of Expert Labor (Chicago: Univ. of Chicago Press, 1988).

62. Dorothy Nelkin, "Managing Biomedical News," Social Research 52 (autumn 1985): 625-646.

63. Barnes and Edge, "Science as Expertise"; Nelkin, "Political Impact of Technical Expertise."

64. Brian Wynne, "Between Orthodoxy and Oblivion: The Normalisation of Deviance in Science," in On the Margins of Science: The Social Construction of Rejected Knowledge, ed. Roy Wallis (Keele, England: Univ. of Keele Press, 1979), 67-84, quote from 79.

65. Shapin, "Cordelia's Love," 260.

66. Collins, Changing Order, 142-145.

67. For critiques of Collins in this regard, see Brian Wynne, "Public Uptake of Science: A Case for Institutional Reflexivity," Public Understanding of Science 2 (1993): 321-337; Hilary Arksey, "Expert and Lay Participation in the Construction of Medical Knowledge," Sociology of Health & Illness 16 (September 1994): 448-468; Evelleen Richards, "(Un)boxing the Monster," Social Studies of Science 26 (May 1996): 323-356.

68. Harry M. Collins and Trevor J. Pinch, "The Construction of the Paranormal: Nothing Unscientific is Happening," in On the Margins of Science: The Social Construction of Rejected Knowledge, ed. Roy Wallis (Keele, England: Univ. of Keele Press, 1979), 237-270.

69. Wynne, "Public Uptake of Science," 331.

70. Quoted in Adele Clarke and Theresa Montini, "The Many Faces of RU486: Tales of Situated Knowledges and Technological Contestations," Science, Technology & Human Values 18 (winter 1993): 42-78, quote from 45.

71. Latour, Science in Action, 175-176.

72. Gieryn, "Boundary Work"; Gieryn, "Boundaries of Science."

73. Adele Clarke, "A Social Worlds Adventure: The Case of Reproductive Science," in Theories of Science in Society, ed. Susan E. Cozzens and Thomas F. Gieryn (Bloomington: Indiana Univ. Press, 1990), 15-42, quote from 18 (I have removed the emphasis on the word "activities" that appeared in the original text). See also Elihu M. Gerson, "Scientific Work and Social Worlds," Knowledge: Creation, Diffusion, Utilization 4 (March 1983): 357-377; Joan H. Fujimura, "The Molecular Biological Bandwagon in Cancer Research: Where Social Worlds Meet," Social Problems 35 (June 1988), 261-283; Susan Leigh Star and James R. Griesemer, "Institutional Ecology, `Translations' and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39," Social Studies of Science 19 (August 1989): 387-420.

74. On boundary objects in science, see Star and Griesemer, "Institutional Ecology, `Translations' and Boundary Objects."

75. Bourdieu, Logic of Practice; Pierre Bourdieu, "The Genesis of the Concepts of Habitus and of Field," Sociocriticism 2 (December 1985), 11-24. Fields are defined in terms of "objective relations between positions" that correlate with "the structure of the distribution of species of power (or capital) whose possession commands access to the specific profits that are at stake in the field" (Pierre Bourdieu and Loïc J. D. Wacquant, An Invitation to Reflexive Sociology [Chicago: Univ. of Chicago Press, 1992], 97).

76. In the end, however, Bourdieu's specific conception of the scientific field is unduly narrow: Bourdieu portrays scientific practice as something carried out in a world of laboratories, universities, and peer-reviewed journals but apparently not in a world of foundations, defense departments, and private industries, let alone activist movements and the mass media. Thus, ironically, his own depiction of the scientific field would be inappropriate for an analysis of the production of scientific knowledge in the AIDS epidemic. Nevertheless, in conceptualizing my work, I find his general theoretical perspective on fields to be useful, as is his understanding of the scientific field as "the locus of a competitive struggle, in which the specific issue at stake is the monopoly of scientific authority." See Bourdieu, "Specificity of the Scientific Field," 19 (emphasis in the original); Pierre Bourdieu, "Animadversiones in Mertonem," in Robert K. Merton: Consensus and Controversy, ed. Jon Clark, Celia Modgil, and Sohan Modgil (London: Falmer Press, 1990), 297-301; Pierre Bourdieu, "The Peculiar History of Scientific Reason," Sociological Forum 6 (March 1991): 3-26. For a critique of Bourdieu's conception of science, see Karin D. Knorr-Cetina, "Scientific Communities or Transepistemic Arenas of Research? A Critique of Quasi-Economic Models of Science," Social Studies of Science 12 (February 1982): 101-130.

77. Dorothy Nelkin, "Controversies and the Authority of Science," in Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science and Technology, ed. H. Tristram Engelhardt Jr. and Arthur L. Caplan (Cambridge, England: Cambridge Univ. Press, 1987), 283-293.

78. James M. Jasper and Dorothy Nelkin, The Animal Rights Crusade: The Growth of a Moral Protest (New York: Free Press, 1992).

79. Lily M. Hoffman, The Politics of Knowledge: Activist Movements in Medicine and Planning (Albany: State Univ. of New York Press, 1989); Kelly Moore, "Doing Good While Doing Science: The Origins and Consequences of Public Interest Science Organizations in America, 1945-1990" (Ph.D. diss., University of Arizona, 1993); Rob Kling and Suzanne Iacono, "The Mobilization of Support for Computerization: Computerization Movements," Social Problems 35 (June 1988): 226-243.

80. Bart Simon, "Post-Closure Cold Fusion and the Survival of a Research Community: An Hauntology for the Scientific Afterlife" (Ph.D. diss., University of California, San Diego, forthcoming). Other studies of the relation between activism and science include Brian Balogh, Chain Reaction: Expert Debate and Public Participation in American Commercial Nuclear Power, 1945-1975 (Cambridge, England: Cambridge Univ. Press, 1991); Brown, "Popular Epidemiology"; Joske Bunders and Loet Leydesdorff, "The Causes and Consequences of Collaborations between Scientists and Non-Scientist Groups," in The Social Direction of the Public Sciences, ed. Stuart Blume et al. (Dordrecht, Holland: D. Reidel, 1987), 331-347; Cozzens and Woodhouse, "Science, Government, and the Politics of Knowledge"; Jacqueline Cramer, Ron Eyerman, and Andrew Jamison, "The Knowledge Interests of the Environmental Movement and Its Potential for Influencing the Development of Science," in The Social Direction of the Public Sciences (above), 89-115; Di Chiro, "Defining Environmental Justice"; Dutton, "Impact of Public Participation"; Debbie Indyk and David Rier, "Grassroots AIDS Knowledge: Implications for the Boundaries of Science and Collective Action," Knowledge: Creation, Diffusion, Utilization 15 (September 1993): 3-43; Robert W. Rycroft, "Environmentalism and Science: Politics and the Pursuit of Knowledge," Knowledge: Creation, Diffusion, Utilization 13 (December 1991): 150-169; von Gizycki, "Cooperation between Medical Researchers and a Self-Help Movement"; and the essays in James C. Petersen, ed., Citizen Participation in Science Policy (Amherst: Univ. of Massachusetts Press, 1984).

81. But see James C. Petersen and Gerald E. Markle, "Expansion of Conflict in Cancer Controversies," Research in Social Movements, Conflicts and Change 4 (1981): 151-169; Moore, "Doing Good While Doing Science"; Indyk and Rier, "Grassroots AIDS Knowledge."

82. See, for example, Bert Klandermans, "The Formation and Mobilization of Consensus," International Social Movement Research 1 (1988): 173-196; Bert Klandermans and Sidney Tarrow, "Mobilization into Social Movements: Synthesizing European and American Approaches," International Social Movement Research 1 (1988): 1-38.

83. See, for example, Alberto Melucci, Nomads of the Present: Social Movements and Individual Needs in Contemporary Society (Philadelphia: Temple Univ. Press, 1989); Verta Taylor and Nancy E. Whittier, "Collective Identity in Social Movement Communities: Lesbian Feminist Mobilization," in Frontiers in Social Movement Theory, ed. Aldon D. Morris and Carol McClurg Mueller (New Haven: Yale Univ. Press, 1992), 104-129; William A. Gamson, "The Social Psychology of Collective Action," in Frontiers in Social Movement Theory (above), 53-76; Joshua Gamson, "Must Identity Movements Self-Destruct? A Queer Dilemma," Social Problems 42 (August 1995): 390-407; Arlene Stein, "Sisters and Queers: The Decentering of Lesbian Feminism," Socialist Review, January-March 1992, 33-55; Hank Johnston, Enrique Laraña, and Joseph R. Gusfield, "Identities, Grievances, and New Social Movements," in New Social Movements: From Ideology to Identity, ed. Enrique Laraña, Hank Johnston, and Joseph R. Gusfield (Philadelphia: Temple Univ. Press, 1994), 3-35.

84. See Todd Gitlin, The Whole World Is Watching: Mass Media in the Making and Unmaking of the New Left (Berkeley: Univ. of California Press, 1980), 6; David A. Snow et al., "Frame Alignment Processes: Micromobilization and Movement Participation," American Sociological Review 51 (August 1986): 464-481; David A. Snow and Robert D. Benford, "Ideology, Frame Resonance, and Participant Mobilization," International Social Movement Research 1 (1988): 197-217; Robert D. Benford and Scott A. Hunt, "Dramaturgy and Social Movements: The Social Construction and Communication of Power," Sociological Inquiry 62 (February 1992): 36-55; William A. Gamson, "Political Discourse and Collective Action," International Social Movements Research 1 (1988): 219-244; Hugh Mehan and John Wills, "MEND: A Nurturing Voice in the Nuclear Arms Debate," Social Problems 35 (October 1988): 363-383.

85. Petersen and Markle, "Expansion of Conflict," 153. On resource mobilization more generally, see W. Gamson, Strategy of Social Protest; McCarthy and Zald, "Resource Mobilization and Social Movements."

86. Indyk and Rier, "Grassroots AIDS Knowledge."

87. See, for example, Carl Boggs, Social Movements and Political Power: Emerging Forms of Radicalism in the West (Philadelphia: Temple Univ. Press, 1986); Jean Cohen, "Strategy or Identity: New Theoretical Paradigms and Contemporary Social Movements," Social Research 52 (winter 1985): 663-716; Barbara Epstein, Political Protest and Cultural Revolution: Nonviolent Direct Action in the 1970s and 1980s (Berkeley: Univ. of California Press, 1991); Jürgen Habermas, "New Social Movements," Telos 49 (fall 1981): 33-37; H. Kriesi, "New Social Movements and the New Class in the Netherlands," American Journal of Sociology 94 (March 1989): 1078-1116; Melucci, Nomads of the Present; Claus Offe, "New Social Movements: Challenging the Boundaries of Institutional Politics," Social Research 52 (winter 1985): 817-868; Alain Touraine, "An Introduction to the Study of Social Movements," Social Research 52 (winter 1985): 749-787; the essays in Aldon D. Morris and Carol McClurg Mueller, eds., Frontiers in Social Movement Theory (New Haven: Yale Univ. Press, 1992); and the essays in Enrique Laraña, Hank Johnston, and Joseph R. Gusfield, eds., New Social Movements: From Ideology to Identity (Philadelphia: Temple Univ. Press, 1994).

That sociology of science has not engaged with the literature on new social movements is, however, less surprising than the fact that the AIDS movement has been ignored by those who study new social movements. For exceptions, see Joshua Gamson, "Silence, Death, and the Invisible Enemy: AIDS Activism and Social Movement `Newness,'" Social Problems 36 (October 1989): 351-365; C. Cohen, "Power, Resistance and the Construction of Crisis"; Gilbert Elbaz, "The Sociology of AIDS Activism, the Case of ACT UP/New York, 1987-1992" (Ph.D. diss., City University of New York, 1992).

88. Alvin W. Gouldner, The Future of Intellectuals and the Rise of the New Class (New York: Oxford Univ. Press, 1979).

89. Habermas, "New Social Movements," 33.

90. Johnston, Laraña, and Gusfield, "Identities, Grievances, and New Social Movements," 6-9.

91. David M. Halperin, Saint Foucault: Toward a Gay Hagiography (New York: Oxford Univ. Press, 1995), 27. See also Simon Watney, Policing Desire: Pornography, AIDS and the Media (Minneapolis: Univ. of Minnesota Press, 1987).

92. Jean Comaroff, "Medicine: Symbol and Ideology," in The Problem of Medical Knowledge, ed. Peter Wright and Andrew Treacher (Edinburgh: Edinburgh Univ. Press, 1982), 49-68, quote from 51.

93. Melucci, Nomads of the Present, 125.

94. On medicine and the body, see Bryan S. Turner, Medical Power and Social Knowledge (London: Sage, 1987); David Armstrong, Political Anatomy of the Body: Medical Knowledge in Britain in the Twentieth Century (Cambridge, England: Cambridge Univ. Press, 1983); Deborah Lupton, Medicine as Culture: Illness, Disease and the Body in Western Societies (London: Sage, 1994), chapter 2.

95. Jim Eigo, "How AIDS Will Change the Way We Test Drugs" (paper presented at the annual conference of the American Academy for the Advancement of Science, Washington, D.C., 17 February, 1991), tape recorded proceedings.

96. Jean Cohen, "Strategy or Identity," 694.

97. W. Gamson, "Social Psychology of Collective Action," 60. On collective identity, see also the citations in note 83. Within science studies, it is Brian Wynne who has most forcefully insisted that the construction and renegotiation of a social identity is what gives rise to "the unacknowledge reflexive capability of laypeople in articulating responses to scientific expertise" ("Misunderstood Misunderstandings: Social Identities and Public Uptake of Science," Public Understanding of Science 1 [July 1992]: 281-304, quote from 301).

98. J. Gamson, "Silence, Death, and the Invisible Enemy," 355, 358.

99. For Foucault's understanding of new social movements as those movements that resist normalization, see Michel Foucault, "The Subject and Power," in Michel Foucault: Beyond Structuralism and Hermeneutics, ed. Hubert Dreyfus and Paul Rabinow (Chicago: Univ. of Chicago Press, 1983), 211-212.

100. Pierre Bourdieu, "Symbolic Power," Critique of Anthropology 4 (summer 1979): 77-85.

101. See, for example, H. M. Collins, "Certainty and the Public Understanding of Science: Science on Television," Social Studies of Science 17 (November 1987): 689-713: Thomas F. Gieryn and Anne E. Figert, "Ingredients for a Theory of Science in Society: O-Rings, Ice Water, C-Clamp, Richard Feynman, and the Press," in Theories of Science in Society, ed. Susan E. Cozzens and Thomas F. Gieryn (Bloomington: Indiana Univ. Press, 1990), 67-97; Rae Goodell, "The Role of the Mass Media in Scientific Controversies," in Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science and Technology, ed. H. Tristram Engelhardt Jr. and Arthur L. Caplan (Cambridge, England: Cambridge Univ. Press, 1987), 585-597; Anne Karpf, Doctoring the Media: The Reporting of Health and Medicine (London: Routledge, 1988); Nelkin, "Managing Biomedical News."

102. David Phillips et al., "Importance of the Lay Press in the Transmission of Medical Knowledge to the Scientific Community," New England Journal of Medicine 325 (17 October 1991): 1180-1183, quote from 1183.

103. Klandermans, "Formation and Mobilization of Consensus," 186.

104. On the capacity of the gay and lesbian press, as an alternative-media institution, to be more resistant to the automatic ratification of medical authority, see Matthew Paul McAllister, "Medicalization in the News Media: A Comparison of AIDS Coverage in Three Newspapers" (Ph.D. diss., University of Illinois at Urbana-Champaign, 1990), 97-106. On alternative media in general, see Nina Eliasoph, "Routines and the Making of Oppositional News," Critical Studies in Mass Communication 5 (Decmeber 1988): 313-334.

105. See Indyk and Rier, "Grassroots AIDS Knowledge"; Katherine Bishop, "Underground Press Leads Way on AIDS Advice," New York Times, 16 December 1991, A-16.

106. See Stephen Hilgartner, "The Dominant View of Popularization: Conceptual Problems, Political Uses," Social Studies of Science 20 (August 1990): 519-539.

107. Indyk and Rier, "Grassroots AIDS Knowledge," 15.

108. Abbott, System of Professions, 323. On the professions, see also Burton J. Bledstein, The Culture of Professionalism: The Middle Class and theDevelopment of Higher Education in America (New York: W. W. Norton, 1976); Magali Sarfatti Larson, The Rise of Professionalism: A Sociological Analysis (Berkeley: Univ. of California Press, 1977). On the medical profession in particular, see also Charles L. Bosk, Forgive and Remember: Managing Medical Failure (Univ. of Chicago Press, 1979); Eliot Freidson, Profession of Medicine: A Study of the Sociology of Applied Knowledge (Chicago: Univ. of Chicago Press, 1988); Starr, Social Transformation of American Medicine.

109. Foucault, Discipline and Punish; Michel Foucault, The History of Sexuality (Vol. 1: An Introduction) (New York: Vintage Books, 1980).

110. Eliot Freidson, "The Impurity of Professional Authority," in Institutions and the Person, ed. Howard S. Becker et al. (Chicago: Aldine, 1968), 25-34.

111. On the "art" vs "science" distinction in medicine, see Deborah R. Gordon, "Clinical Science and Clinical Expertise: Changing Boundaries between Art and Science in Medicine," in Biomedicine Examined, ed. M. Lock and D. R. Gordon (Dordrecht, Holland: Kluwer Academic Publishing, 1988), 257-295. On the related distinction between the "applied" knowledge of the practitioner and the "formal" knowledge of the academic, see Eliot Freidson, Professional Powers: A Study of the Institutionalization of Formal Knowledge (Chicago: Univ. of Chicago Press, 1986).

112. For a mission statement in that regard, see Monica J. Casper and Marc Berg, "Constructivist Perspectives on Medical Work: Medical Practices and Science and Technology Studies," Science, Technology, & Human Values 20 (autumn 1995): 395-407.

113. Snow and Benford have noted that social movements first diagnose problems and attribute blame or causality, then offer a prognosis by specifying solutions, strategies, tactics, and targets ("Ideology, Frame Resonance, and Participant Mobilization," 197-217). Abbott, in his study of the professions, identified the "sequence of diagnosis, inference, and treatment" as "the essential cultural logic of professional practice" (Abbott, System of Professions, 40). Michael Schudson used equivalent terms to describe the professional orientation of news reporters in their packaging of social reality in the form of stories (Michael Schudson, Discovering the News: A Social History of American Newspapers [New York: Basic Books, 1978]).

114. Gitlin, The Whole World Is Watching, 6; see also Erving Goffman, Frame Analysis: An Essay on the Organization of Experience (New York: Harper & Row, 1974), 10-11.

115. Gitlin, Whole World Is Watching, 28.

116. Charles E. Rosenberg, "Framing Disease: Illness, Society, and History (Introduction)," in Framing Disease: Studies in Cultural History, ed. Charles E. Rosenberg and Janet Golden (New Brunswick, N.J.: Rutgers Univ. Press, 1992), xiii-xxvi. Although she has used a different vocabulary, Susan Sontag is also fundamentally concerned with the "framing of disease" and "disease as frame"; see Illness as Metaphor (New York: Farrar, Straus and Giroux, 1978) and AIDS and Its Metaphors (New York: Farrar, Straus and Giroux, 1989).

117. Joel Best, "Introduction: Typification and Social Problems Construction," in Images of Issues: Typifying Contemporary Social Problems, ed. Joel Best (New York: Aldine de Gruyter, 1989), xv-xxii. See also Joseph W. Schneider and John I. Kitsuse, eds., Studies in the Sociology of Social Problems (Norwood, N.J.: Albex, 1984); Joseph R. Gusfield, The Culture of Public Problems (Chicago: Univ. of Chicago Press, 1981).

118. See note 84 above.

119. Snow and Benford, "Ideology, Frame Resonance, and Participant Mobilization," 198.

120. David A. Snow and Robert D. Benford, "Master Frames and Cycles of Protest," in Frontiers in Social Movement Theory, ed. Aldon D. Morris and Carol McClurg Mueller (New Haven: Yale Univ. Press, 1992), 133-155.

121. Clearly there are unexplored affinities here between the conceptions of mobilization, representation, and collective identity formation that have been developed in the study of social movements and parallel concepts in science studies. One obvious example is Latour's notion of "enrollment" (Science in Action). Another is Shapin's analysis of how the constitution of personal and collective scientific identities was a crucial step in the creation of modern scientific organizations and methods and a prerequisite for the production of credible scientific knowledge (Social History of Truth, 42-64, 126 ff). See also Brian Wynne's analysis of collective identity in "Misunderstood Misunderstandings."

122. Shapin, "Cordelia's Love," 260.

123. Cf. Paul Starr's observation that authority rests on the "twin supports of dependence and legitimacy": "When one is weak, the other may take over ..." (Social Transformation of American Medicine, 10).

124. See Latour's discussion of the stripping away of "modalities" (qualifiers) in the construction of scientific facts in Science in Action, 22 ff.

125. F. Barré-Sinoussi et al., "Isolation of a T-Lymphotropic Retrovirus from a Patient at Risk for Acquired Immune Deficiency Syndrome (AIDS)," Science 220 (20 May 1983): 868-870; Robert C. Gallo et al., "Frequent Detection and Isolation of Cytopathic Retroviruses (HTLV-III) from Patients with AIDS and at Risk for AIDS," Science 224 (4 May 1984): 500-502; Jay A. Levy et al., "Isolation of Lymphocytopathic Retroviruses from San Francisco Patients with AIDS," Science 225 (24 August 1984): 840-842.

126. The phrase is from Cindy Patton, Inventing AIDS (New York: Routledge, 1990), chapter 3.

127. Peter Duesberg, "Retroviruses as Carcinogens and Pathogens: Expectations and Reality," Cancer Research 47 (1 March 1987): 1199-1220; quote from 1215.

128. P.H. Duesberg, "The Role of Drugs in the Origin of AIDS," Biomedicine & Pharmacotherapy 46 (January 1992): 10.

129. Jon Cohen, "The Duesberg Phenomenon," Science 266 (9 December 1994): 1642-1649.

130. Manfred Eigen, "The AIDS Debate," Naturwissenschaften 76 (August 1989): 341-350; Luis Benitez Bribiesca, "¿Son En Verdad Los VIH Los Agentes Causales Del SIDA?" Gaceta Médica de México 127 (January-February 1991): 75-84.

131. Joel N. Shurkin, "The AIDS Debate: Another View," Los Angeles Times, 18 January 1988, II-4; Philip M. Boffey, "A Solitary Dissenter Disputes Cause of AIDS," New York Times, 12 January 1988, C-3; Neville Hodgkinson, "Experts Mount Startling Challenge to Aids Orthodoxy," Sunday Times (London), 26 April 1992, 1.

132. National Public Radio (segment reported by Mike Hornwick, Canadian Broadcasting Corporation), NPR Weekend Edition, 16 May 1992; Gary Null, "AIDS: A Man-Made Plague?" Penthouse, January 1989, 160.

133. "Who Are the HIV Heretics?: Discussion Paper #5" (Project Inform, San Francisco, 3 June, 1992, photocopy); Celia Farber, "AIDS: Words from the Front." Spin, January 1988, 43-44, 73.

134. See chapters 3 and 4 for many examples.

135. See, for instance, Tom Bethell, "Heretic," American Spectator, May 1992, 18-19.

136. Peter H. Duesberg and Bryan J. Ellison, "Peter H. Duesberg and Bryan J. Ellison Respond," Heritage Foundation Policy Review, fall 1990, 81-83 (letter to the editor).

137. From the public forum at the VIII International Conference on AIDS Update, San Francisco, 10 August 1992 (author's field notes).

138. Latour, Science in Action, chapter 1.

139. Collins, Changing Order, 162.

140. See Henry Frankel, "The Continental Drift Debate," in Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science and Technology, ed. H. Tristram Engelhardt Jr. and Arthur L. Caplan (Cambridge, England: Cambridge Univ. Press, 1987), 203-248.

141. Jad Adams, "Paradigm Unvisited," Heritage Foundation Policy Review, fall 1990, 75-76 (letter to the editor).

142. On closure in scientific controversies, see H. Tristram Engelhardt Jr. and Arthur L. Caplan, eds., Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science and Technology (Cambridge, England: Cambridge Univ. Press, 1987); Harry Collins, "The Seven Sexes: A Study in the Sociology of a Phenomenon, or the Replication of Experiments in Physics," Sociology 9 (May 1975): 205-224; Peter Galison, How Experiments End (Chicago: Univ. of Chicago Press, 1987).

143. Jason DeParle, "Rush, Rash, Effective, Act-Up Shifts AIDS Policy," New York Times, 3 January 1990, B-1.

144. Albert R. Jonsen and Jeff Stryker, eds., The Social Impact of AIDS in the United States (Washington, D.C.: National Academy Press, 1993), 89-90.

145. Gregg Gonsalves and Mark Harrington, "AIDS Research at the NIH: A Critical Review. Part I: Summary" (Treatment Action Group, New York, 1992, photocopy), 1.

146. See Gregg Gonsalves, "Basic Research on HIV Infection: A Report from the Front" (Treatment Action Group, New York, 1993, photocopy); Martin Delaney, "The Evolution of Community-Based Research" (Plenary Address at the IX International Conference on AIDS), Berlin, 8 June 1993.

147. There is an emergent literature in science studies on the history, functions, and controversies surrounding the randomized clinical trial. See Harry Milton Marks, "Ideas as Reforms: Therapeutic Experiments and Medical Practice, 1900-1980" (Ph.D. diss., Massachusetts Institute of Technology, 1987); Evelleen Richards, "The Politics of Therapeutic Evaluation: The Vitamin C and Cancer Controversy," Social Studies of Science 18 (1988), 653-701; Evelleen Richards, Vitamin C and Cancer: Medicine or Politics? (New York: St. Martin's, 1991); Anni Dugdale, "Devices and Desires: Constructing the Intrauterine Device, 1908-1988" (Ph.D. diss., Univ. of Wollongong, Australia, 1995); Marcia Lynn Meldrum, "'Departing from the Design': The Randomized Clinical Trial in Historical Context, 1946-1970" (Ph.D. diss., State University of New York at Stony Brook, 1994); J. Rosser Matthews, Quantification and the Quest for Medical Certainty (Princeton: Princeton Univ. Press, 1995); Caroline Jean Acker, "Addiction and the Laboratory: The Work of the National Research Council's Committee on Drug Addiction, 1928-1939," Isis 86 (June 1995): 167-193; Alan Yoshioka, "British Clinical Trials of Streptomycin, 1946-51" (Ph.D. diss., Imperial College, forthcoming).

148. See Robert M. Veatch, The Patient as Partner: A Theory of Human-Experimentation Ethics (Bloomington: Indiana Univ. Press, 1987), 6-7, 211.

149. Meldrum, Departing from the Design, 384-386.

150. The latter phrase is borrowed from Richards, "Politics of Therapeutic Evaluation."

151. Douglas Richman, interview by author, tape recording, San Diego, 1 June 1994.

152. Shapin, "Cordelia's Love," 262.

153. On the denaturalization of research materials, see Adele E. Clarke, "Research Materials and Reproductive Science in the United States, 1910-1940," in Physiology in the American Context, 1850-1940, ed. Gerald L. Geison (Bethesda, Md.: American Physiological Society, 1987), 323-350. On the destabilization of technologies, see Ronald Kline and Trevor Pinch, "Taking the Black Box Off Its Wheels: The Social Construction of the Car in the Rural United States" (manuscript, Cornell University, 2 February 1995). On the tactic of revealing the "artifactual and conventional" status of the beliefs of one's opponents in scientific controversies, see Shapin and Schaffer, Leviathan and the Air-Pump, 7.

154. See Jack P. Lipton and Alan M. Hershaft, "On the Widespread Acceptance of Dubious Medical Findings," Journal of Health and Social Behavior 26 (December 1985): 336-351.

155. Sheila Jasanoff, The Fifth Branch: Science Advisers as Policymakers (Cambridge, Mass.: Harvard Univ. Press, 1990), chapter 8; Henk J. H. W. Bodewitz, Henk Buurma, and Gerard H. de Vries, "Regulatory Science and the Social Management of Trust in Medicine," in The Social Construction of Technological Systems: New Directions in the Sociology and History of Technology, ed. Wiebe E. Bijker, Thomas P. Hughes, and Trevor J. Pinch (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1987), 243-259; John Abraham, "Distributing the Benefit of the Doubt: Scientists, Regulators, and Drug Safety," Science, Technology, & Human Values 19 (autumn 1994): 493-522; Brian Wynne, "Unruly Technology: Practical Rules, Impractical Discourses and Public Understanding," Social Studies of Science, 18 (1988), 147-167, esp. 162-63; Theodore M. Porter, Trust in Numbers: The Pursuit of Objectivity in Science and Public Life (Princeton, N.J.: Princeton Univ. Press, 1995), 203-216.

156. Jasanoff, The Fifth Branch, 76-83. On the adversarial culture of regulation in the United States, see Sheila Jasanoff, "Cross-National Differences in Policy Implementation," Evaluation Review 15 (February 1991): 103-119.

157. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin's, 1987). Shilts died of AIDS in 1994.

158. Steve Connor and Sharon Kingman, The Search for the Virus, 2d ed. (London: Penguin Books, 1989).

159. C. Self, W. Filardo, and W. Lancaster, "Acquired Immunodeficiency Syndrome (AIDS) and the Epidemic Growth of Its Literature," Scientometrics 17 (July 1989): 49-60; I. N. Sengupta and Lalita Kumari, "Bibliometric Analysis of AIDS Literature," Scientometrics 20 (1991): 297-315; Jonathan Elford, Robert Bor, and Pauline Summers, "Research into HIV and AIDS between 1981 and 1990: The Epidemic Curve," AIDS 5 (December 1991): 1515-1519; John S. Lyons et al., "A Systematic Analysis of the Quantity of AIDS Publications and the Quality of Research Methods in Three General Medical Journals," Evaluation and Program Planning 13 (1990): 73-77.

160. Henry Small and Edwin Greenlee, "A Co-Citation Study of AIDS Research," in Scholarly Communication and Bibliometrics, ed. Christine L. Borgman (Newbury Park, Calif.: Sage, 1990), 166-193.

161. See Indyk and Rier, "Grassroots AIDS Knowledge."

162. Dennis Altman, AIDS in the Mind of America (Garden City, N.J.: Anchor Press, 1986); Cindy Patton, Sex and Germs: The Politics of AIDS (Boston: South End Press, 1985).

163. Patton, Inventing AIDS; Dennis Altman, Power and Community: Organizational and Cultural Responses to AIDS (London: Taylor & Francis, 1994).

164. Paula A. Treichler, "AIDS: An Epidemic of Signification," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 31-70; "AIDS, Gender, and Biomedical Discourse: Current Contests for Meaning," in AIDS: The Burdens of History, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1988), 190-266; "How to Have Theory in an Epidemic: The Evolution of AIDS Treatment Activism," in Technoculture, ed. Constance Penley and Andrew Ross (Minneapolis: Univ. of Minnesota Press, 1991), 57-106; "AIDS, HIV, and the Cultural Construction of Reality," in The Time of AIDS: Social Analysis, Theory, and Method, ed. Gilbert Herdt and Shirley Lindenbaum (Newbury Park, Calif.: Sage, 1992), 65-98.

165. Sontag, AIDS and Its Metaphors; Watney, Policing Desire, Simon Watney, "The Spectacle of AIDS," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 71-86; Emily Martin, Flexible Bodies: Tracking Immunity in American Culture—From the Days of Polio to the Age of AIDS (Boston: Beacon Press, 1994); John Nguyet Erni, Unstable Frontiers: Technomedicine and the Cultural Politics of "Curing" AIDS (Minneapolis: Univ. of Minnesota Press, 1994); Allan M. Brandt, "AIDS and Metaphor: Toward the Social Meaning of Epidemic Disease," Social Research 55 (autumn 1988): 413-432; Sander Gilman, "AIDS and Syphilis: The Iconography of Disease," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 87-107; Laurence J. Ray, "AIDS as a Moral Metaphor: An Analysis of the Politics of the 'Third Epidemic,'" Archives Européennes de Sociologie 30 (June 1989): 243-273; Alfred J. Fortin, "AIDS, Surveillance and Public Policy: The Politics of Medical Discourse" (Ph.D. diss., University of Hawaii, 1989).

166. Watney, Policing Desire; Edward Albert, "AIDS and the Press: The Creation and Transformation of a Social Problem," in Images of Issues: Typifying Contemporary Social Problems, ed. Joel Best (New York: Aldine de Gruyter, 1989), 39-54; David C. Colby and Timothy E. Cook, "Epidemics and Agendas: The Politics of Nightly News Coverage of AIDS," Journal of Health Politics, Policy and Law 16 (summer 1991): 215-249; James Kinsella, Covering the Plague: AIDS and the American Media (New Brunswick, N.J.: Rutgers Univ. Press, 1989); McAllister, Medicalization in the News Media; Claudine Herzlich and Janine Pierret, "The Construction of a Social Phenomenon: AIDS in the French Press," Social Science & Medicine 29 (June 1989): 1235-1242; Ivan Emke, "Speaking of AIDS in Canada: The Texts and Contexts of Official, Counter-Cultural and Mass Media Discourses Surrounding AIDS" (Ph.D. diss., Carleton University, Ottawa, Ontario, 1991); W. Russell Neuman, Marion R. Just, and Ann N. Crigler, Common Knowledge: News and the Construction of Political Meaning (Chicago: Univ. of Chicago Press, 1992).

167. C. Cohen, "Power, Resistance and the Construction of Crisis"; Corea, Invisible Epidemic; Elbaz, "Sociology of AIDS Activism"; J. Gamson, "Silence, Death, and the Invisible Enemy"; Beth E. Schneider and Nancy E. Stoller, eds., Women Resisting AIDS: Feminist Strategies of Empowerment (Philadelphia: Temple Univ. Press, 1995); Maxine Wolfe, "The AIDS Coalition to Unleash Power, New York (ACT UP NY): A Direct Action Political Model of Community Research for AIDS Prevention," in AIDS Prevention and Services: Community Based Research, ed. J. Van Vugt (Westport, Conn.: Bergin Garvey, forthcoming); Ernest Quimby and Samuel R. Friedman, "Dynamics of Black Mobilization against AIDS in New York City," Social Problems 36 (October 1989): 403-415; Douglas Crimp and Adam Rolston, AIDS Demographics (Seattle: Bay Press, 1990); Ty Geltmaker, "The Queer Nation Acts Up: Health Care, Politics, and Sexual Diversity in the County of Angels," Society and Space 10 (December 1992): 609-650.

168. On women, see ACT UP/New York Women and AIDS Book Group, Women, AIDS, and Activism (Boston: South End Press, 1990); Schneider and Stoller, Women Resisting AIDS; Corea, Invisible Epidemic; Cindy Patton, Last Served: Gendering the HIV Pandemic (London: Taylor & Francis, 1994). On African-Americans, see C. Cohen, "Power, Resistance, and the Construction of Crisis"; Harlon L. Dalton, "AIDS in Blackface," Daedalus 118 (summer 1989): 205-227; Evelynn Hammonds, "Race, Sex, AIDS: The Construction of `Other,'" Radical America, November-December 1986, 28-36; Quimby and Friedman, "Dynamics of Black Mobilization against AIDS." On Haitians, see Paul Farmer, AIDS and Accusation: Haiti and the Geography of Blame (Berkeley: Univ. of California Press, 1992). On prostitutes, see Valerie Jenness, Making It Work: The Prostitutes' Rights Movement in Perspective (New York: Aldine de Gruyter, 1993). On injection drug users, see Don C. Des Jarlais, Samuel R. Friedman, and Jo L. Sotheran, "The First City: HIV among Intravenous Drug Users in New York City," in AIDS: The Making of a Chronic Disease, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1992), 279-295.

169. Charles L. Bosk and Joel E. Frader, "AIDS and Its Impact on Medical Work: The Culture and Politics of the Shop Floor," Milbank Quarterly 68, suppl. 2 (1990): 257-279; Mary-Rose Mueller, "Science in the Community: The Redistribution of Medical Authority in Federally Sponsored Treatment Research for AIDS" (Ph.D. diss., University of California at San Diego, 1995); Robert M. Wachter, The Fragile Coalition: Scientists, Activists, and AIDS (New York: St. Martin's, 1991); Robert M. Wachter, "The Impact of the Acquired Immunodeficiency Syndrome on Medical Residency Practice," New England Journal of Medicine 314 (16 January 1986): 177-180; Rosenberg, "Disease and Social Order in America."

170. For example, Charles Perrow and Mauro F. Guillèn, The AIDS Disaster (New Haven: Yale Univ. Press, 1990); Ronald bayer, Private Acts, Social Consequences: AIDS and the Politics of Public Health (New York: Free Press, 1989); David L. Kirp and Ronald Bayer, eds., AIDS in the Industrialized Democracies: Passions, Politics, and Policies (New Brunswick, N.J.: Rutgers Univ. Press, 1992); Sandra Panem, The AIDS Bureaucracy (Cambridge, Mass.: Harvard Univ. Press, 1988); Daniel M. Fox, "AIDS and the American Health Polity: The History and Prospects of a Crisis of Authority," in AIDS: The Burdens of History, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1988), 316-343; Michaël Pollak, Geneviève Paicheler, and Janine Pierret, AIDS: A Problem for Sociological Research (London: Sage, 1992); David L. Kirp et al., Learning by Heart: AIDS and Schoolchildren in America's Communities (New Brunswick, N.J.: Rutgers, 1989).

171. For example, Rose Weitz, Life with AIDS (New Brunswick, N.J.: Rutgers Univ. Press, 1991); Steven Seidman, "Transfiguring Sexual Identity: AIDS and the Contemporary Construction of Homosexuality," Social Text 19/20 (fall 1988): 187-205; Peter Conrad, "The Social Meaning of AIDS," Social Policy (summer 1986), 51-56; Eric Gilder, "The Process of Political Praxis: Efforts of the Gay Community to Transform the Social Signification of AIDS," Communication Quarterly 37 (winter 1989): 27-38; Richard Poirier, "AIDS and Traditions of Homophobia," Social Research 55 (autumn 1988): 461-475.

172. Murray and Payne, "Medical Policy without Scientific Evidence"; Stephen O. Murray and Kenneth W. Payne, "The Social Classification of AIDS in American Epidemiology," Medical Anthropology 10 (March 1989): 115-128; Gerald M. Oppenheimer, "In the Eye of the Storm: The Epidemiological Construction of AIDS," in AIDS: The Burdens of History, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1988), 267-300.

173. Joan H. Fujimura and Danny Y. Chou, "Dissent in Science: Styles of Scientific Practice and the Controversy over the Cause of AIDS," Social Scienceand Medicine 38 (April 1994): 1017-1036. This article provides an intriguing analysis of the use of competing "styles of scientific practice" in the causation controversy. While offering an overview of the public dimensions of the Duesberg controversy, the authors have not placed those dimensions in the foreground where I believe they belong—as essential to the very constitution of the scientific controversy and the dynamics of its unfolding. On the AIDS causation controversy, see also Treichler, "AIDS, HIV, and the Cultural Construction of Reality."

174. Peter S. Arno and Karyn L. Feiden, Against the Odds: The Story of AIDS Drug Development, Politics and Profits (New York: HarperCollins, 1992); Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992); Bruce Nussbaum, Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight Against AIDS (New York: Atlantic Monthly Press, 1990); Wachter, The Fragile Coalition; Harold Edgar and David J. Rothman, "New Rules for New Drugs: The Challenge of AIDS to the Regulatory Process," The Milbank Quarterly 68, suppl. 1 (1990): 111-142; Corea, Invisible Epidemic; Mueller, "Science in the Community"; Jonsen and Stryker, Social Impact of AIDS, chapter 4; Meurig Horton, "Bugs, Drugs and Placebos: The Opulence of Truth, or How to Make a Treatment Decision in an Epidemic," in Taking Liberties: AIDS and Cultural Politics, ed. Erica Carter and Simon Watney (London: Serpent's Tail, 1989), 161-181; Arthur D. Kahn, AIDS: The Winter War (Philadelphia: Temple Univ. Press, 1993); William Francis Patrick Crowley III, "Gaining Access: The Politics of AIDS Clinical Drug Trials in Boston" (undergraduate thesis, Harvard College, 1991). Another book on this subject is being published as this one goes to press: Elinor Burkett, The Gravest Show on Earth: America in the Age of AIDS (New York: Houghton Mifflin, 1995).

175. On vaccine development, see Christine Grady, The Search for an AIDS Vaccine: Ethical Issues in the Development and Testing of a Preventive HIV Vaccine (Bloomington: Indiana Univ. Press, 1995); P. Lurie et al., "Ethical, Behavioral, and Social Aspects of HIV Vaccine Trials in Developing Countries," Journal of the American Medical Association 271 (January 1994): 295-301.

Chapter 1 The Nature of a New Threat

1. Dominique Lapierre, Beyond Love, trans. Kathryn Spink (New York: Warner Books, 1991), 51-54; Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin's, 1987), 42-67.

2. "Pneumocystis Pneumonia—Los Angeles," Morbidity and Mortality Weekly Report 30 (5 June 1981): 250-252.

3. "Kaposi's Sarcoma and Pneumocystis Pneumonia among Homosexual Men—New York City and California," Morbidity and Mortality Weekly Report 30 (3 July 1981): 305-308.

4. Lawrence K. Altman, "Rare Cancer Seen in 41 Homosexuals," New York Times, 3 July 1981, A-20.

5. Lawrence Mass, "Cancer in the Gay Community," New York Native, 27 July 1981, 1, 21, 30.

6. Michael S. Gottlieb et al., "Pneumocystis Carinii Pneumonia and Mucosal Candidiasis Found in Previously Healthy Homosexual Men," New England Journal of Medicine 305 (10 December 1981): 1425-1431; Henry Masur et al., "An Outbreak of Community-Acquired Pneumocystis Carinii Pneumonia," New England Journal of Medicine 305 (10 December 1981): 1431-1438; Frederick P. Siegal et al., "Severe Acquired Immunodeficiency in Male Homosexuals, Manifested by Chronic Perianal Ulcerative Herpes Simplex Lesions," New England Journal of Medicine 305 (10 December 1981): 1439-1444; David T. Durack, "Opportunistic Infections and Kaposi's Sarcoma in Homosexual Men," New England Journal of Medicine 305 (10 December 1981): 1465-1467; Centers for Disease Control Task Force on Kaposi's Sarcoma and Opportunistic Infections, "Special Report: Epidemiologic Aspects of the Current Outbreak of Kaposi's Sarcoma and Opportunistic Infections," New England Journal of Medicine 306 (28 January 1982): 248-252.

7. Helper T cells go by various names, including T4 cells and CD4 cells, the latter term referring to the CD4 molecule that serves as the receptor site by which other entities bind to the cell. Colloquially, in discussions of AIDS, these cells are often simply called T cells, and I shall do the same except when it is important to distinguish the helper T cells from other varieties of T cells. Increasingly, however, laypeople who are "in the know" use the term "CD4" to demonstrate their linguistic competence. In the later chapters of the book, I adopt that term as well.

8. Siegal et al., "Severe Acquired Immunodeficiency in Male Homosexuals," 1441.

9. Robert O. Brennan and David T. Durack, "Gay Compromise Syndrome," Lancet 2 (December 1981): 1338-1339 (letter to the editor).

10. Masur et al., "Outbreak of Community-Acquired Pneumocystis Carinii Pneumonia."

11. Durack, "Opportunistic Infections and Kaposi's Sarcoma in Homosexual Men," 1466.

12. Matt Clark and Mariana Gosnell, "Diseases That Plague Gays," Newsweek, 21 December 1981, 51-52.

13. Dennis Altman, AIDS in the Mind of America (Garden City: Anchor Press/Doubleday, 1986), 33-36, esp. 35; see also Cindy Patton, Sex and Germs: The Politics of AIDS (Boston: South End Press, 1985), 6-7.

14. On "normalization," see Michel Foucault, Discipline and Punish: The Birth of the Prison (New York: Vintage Books, 1979).

15. Gottlieb et al., for instance, reported in December 1981 that, of four patients, one had been monogamous for four years, two had several regular partners, and only one "was highly sexually active and frequented homosexual bars and bathhouses" ("Pneumocystis Carinii Pneumonia and Mucosal Candidiasis," 1429).

16. Irving Kenneth Zola, "Pathways to the Doctor: From Person to Patient," in Perspectives in Medical Sociology, ed. Phil Brown (Belmont, Calif.: Wadsworth, 1989), 223-238, quote from 234.

17. Eliot Freidson, Profession of Medicine: A Study of the Sociology of Applied Knowledge (Chicago: Univ. of Chicago Press, 1988), 270.

18. David Perlman, "Drug Users Started AIDS Epidemic, Doctor Says," San Francisco Chronicle, 18 October 1985, 28; Cindy Patton, Inventing AIDS (New York: Routledge, 1990), 27-28.

19. The currency of this term has been reported by Shilts, among others, and it was used in the New York Times (Shilts, And the Band Played On, 121; Lawrence K. Altman, "New Homosexual Disorder Worries Health Officials," New York Times, 11 May 1982, C1). However, as Murray and Payne have noted, few instances can be found in the published medical literature, suggesting that "GRID" never became institutionalized as a legitimate designation for the syndrome (Stephen O. Murray and Kenneth W. Payne, "Medical Policy without Scientific Evidence: The Promiscuity Paradigm and AIDS," California Sociologist 11 [winter-summer 1988]: 13-54, esp. 44, note 5). But see Michael S. Gottlieb et al., "Gay-Related Immunodeficiency (GRID) Syndrome: Clinical and Autopsy Observations" (abstract submitted to the Thirty-Ninth Annual National Meeting of the American Federation for Clinical Research, Washington, D.C., 7-10 May 1982), Clinical Research 30 (April 1982): 349A; M. Vogt et al., "GRID-Syndrome," Deutsche Medizinische Wochenschrift 107 (15 October 1982): 1539-1542.

20. On "framing," see Erving Goffman, Frame Analysis: An Essay on the Organization of Experience (New York: Harper & Row, 1974). On the framing of illnesses, see Charles E. Rosenberg, "Introduction: Framing Disease: Illness, Society, and History," in Framing Disease: Studies in Cultural History, ed. Charles E. Rosenberg and Janet Golden (New Brunswick, N.J.: Rutgers Univ. Press, 1992), xiii-xxvi.

21. See Gerald M. Oppenheimer, "In the Eye of the Storm: The Epidemiological Construction of AIDS," in AIDS: The Burdens of History, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1988), 279-280.

22. Shilts, And the Band Played On, 83, 104, 171.

23. Henry L. Kazal et al., "The Gay Bowel Syndrome: Clinico-Pathologic Correlation in 260 Cases," Annals of Clinical and Laboratory Science 6 (March-April 1976): 184-192; Yehudi M. Felman, "Examining the Homosexual Male for Sexually Transmitted Diseases," Journal of the American Medical Association 238 (7 November 1977): 2046-2047; Samuel Vaisrub, "Homosexuality—A Risk Factor in Infectious Disease," Journal of the American Medical Association 238 (26 September 1977): 14 (editorial); Alexander McMillan, "Gonorrhea in Homosexual Men: Frequency of Infection by Culture Site," Sexually Transmitted Diseases 5 (October-December 1978): 146-150; Richard R. Babb, "Sexually Transmitted Infections in Homosexual Men," Postgraduate Medicine 65 (March 1979): 215-218; Yehudi M. Felman, "Homosexual Hazards," The Practitioner 224 (November 1980): 1151-1156; Franklyn N. Judson, "Comparative Prevalence Rates of Sexually Transmitted Diseases in Heterosexual and Homosexual Men," American Journal of Epidemiology 112 (December 1980): 836-843; William M. Owen Jr., "Sexually Transmitted Diseases and Traumatic Problems in Homosexual Men," Annals of Internal Medicine 92 (June 1980): 805-808; H. Hunter Handsfield, "Sexually Transmitted Diseases in Homosexual Men," American Journal of Public Health 71 (September 1981): 989-990 (editorial); R. R. Willcox, "Sexual Behaviour and Sexually Transmitted Disease Patterns in Male Homosexuals," British Journal of Venereal Diseases 57 (June 1981): 167-169.

24. See Steven Epstein, "Moral Contagion and the Medicalizing of Gay Identity: AIDS in Historical Perspective," Research in Law, Deviance and Social Control 9 (1988): 3-36.

25. Felman, "Homosexual Hazards."

26. Michel Foucault, The History of Sexuality, vol. 1 (New York: Vintage, 1980), 43; Jeffrey Escoffier, "The Politics of Gay Identity," Socialist Review, July-October 1985, 119-153; Jeffrey Weeks, Sexuality and Its Discontents: Meanings, Myths and Modern Sexualities (London: Routledge & Kegan Paul, 1985); Peter Conrad and Joseph W. Schneider, Deviance and Medicalization: From Badness to Sickness (St. Louis: C. V. Mosby, 1980).

27. For a history of "gay bowel syndrome" and its relation to essentialist conceptions of the gay male body, see Michael Scarce, "Urban Bums and Rough Rides: A Bad Case of Gay Bowel Syndrome" (master's thesis, Ohio State University, 1995). Clearly, there are important parallels here to the medical portrayal of gender and racial differences; see Deborah Lupton, Medicine as Culture: Illness, Disease and the Body in Western Societies (London: Sage, 1994).

28. Alan P. Bell and Martin S. Weinberg, Homosexualities: A Study of Diversity among Men and Women (New York: Simon and Schuster, 1978).

29. In fact, most of these blanket characterizations of gay male sexuality were based on studies of patients at clinics for treatment of sexually transmitted diseases. One study did attempt to recruit a large sample of homosexual men from the "gay community" at large by distributing questionnaries in a gay magazine and through gay organizations (William Darrow et al., "The Gay Report on Sexually Transmitted Diseases," American Journal of Public Health 71 [September 1981]: 1004-1011); but it is doubtful that the 1.5 percent response rate generated a representative sample of readers of the magazine or members of the organizations, let alone members of "the gay community," whatever its supposed locus and boundaries.

30. "Immunocompromised Homosexuals," Lancet 2 (12 December 1981): 1326 (editorial).

31. Murray and Payne, "Medical Policy without Scientific Evidence"; Stephen O. Murray and Kenneth W. Payne, "The Social Classification of AIDS in American Epidemiology," Medical Anthropology 10 (March 1989): 115-128.

32. Quoted in "Safe-Sex Comic Book for Gays Riles Senate," San Francisco Chronicle, 15 October 1987, A-7.

33. Jana L. Armstrong, "Causal Explanations of AIDS," in The Meaning of AIDS: Implications for Medical Science, Clinical Practice, and Public Health Policy, ed. Eric T. Juengst and Barbara A. Koenig (New York: Praeger, 1989), 12.

34. Dorland's Illustrated Medical Dictionary, 27th ed. (Philadelphia: W. B. Saunders Company, 1988), 285.

35. Charles Rosenberg, The Cholera Years (Chicago: Univ. of Chicago Press, 1962), 133-150.

36. Judith Walkowitz, Prostitution and Victorian Society: Women, Class, and the State (Cambridge, England: Cambridge Univ. Press, 1980), 56.

37. Joan Trauner, "The Chinese as Medical Scapegoats in San Francisco, 1870-1905," California History, spring 1978, 70-87.

38. Shilts, And the Band Played On, 149.

39. See Michael Bronski, "AIDing Our Guilt and Fear," Gay Community News, 9 October 1982, 8.

40. A publication called BAPHRON, the newsletter for the Bay Area chapter, is a useful source of information about the activities and concerns of this group.

41. See Dennis Altman, The Homosexualization of America (Boston: Beacon Press, 1982).

42. See D. Altman, AIDS in the Mind of America; Patton, Sex and Germs; Steven Petrow, Pat Franks, and Timothy R. Wolfred, eds., Ending the HIV Epidemic: Community Strategies in Disease Prevention and Health Promotion (Santa Cruz, Calif.: Network Publications, 1990).

43. Quoted in Lawrence Mass, "An Epidemic Q&A," New York Native, 21 June 1982, 11 (emphasis in the original).

44. "Update on Acquired Immune Deficiency Syndrome (AIDS)—United States," Morbidity and Mortality Weekly Report 31 (24 September 1982): 508.

45. Lawrence K. Altman, "AIDS Now Seen as a Worldwide Health Problem," New York Times, 29 November 1983, C-1.

46. Cristine Russell, "Body's Immune System Disease Seen Occurring Also in Equatorial Africa," Washington Post, 2 April 1983, A-7.

47. Victor Cohn, "Africa May Be the Origin of AIDS Disease," Washington Post, 27 November 1983, A-4.

48. Anthony S. Fauci, "The Syndrome of Kaposi's Sarcoma and Opportunistic Infections: An Epidemiologically Restricted Disorder of Immunoregulation," Annals of Internal Medicine 96 (June 1982): 777-779 (editorial).

49. "Opportunistic Infections and Kaposi's Sarcoma among Haitians in the United States," Morbidity and Mortality Weekly Report 31 (9 July 1982): 353-361.

50. "Pneumocystis Carinii Pneumonia among Persons with Hemophilia A," Morbidity and Mortality Weekly Report 31 (16 July 1982): 366.

51. Lawrence Mass, "A Major Meeting on the Epidemic," New York Native, 2 August 1982, 11, 12.

52. Allan M. Brandt, No Magic Bullet: A Social History of Venereal Diseases in the United States Since 1880 (New York: Oxford Univ. Press, 1985), 4.

53. René Dubos, Mirage of Health: Utopias, Progress, and Biological Change (New York: Harper & Brothers, 1959), 86.

54. Judith S. Mausner and Shira Kramer, Epidemiology—An IntroductoryText, 2d ed. (Philadelphia: W. Saunders, 1985), 27-34. For a critique of such approaches, see Sylvia Noble Tesh, Hidden Arguments: Political Ideology and Disease Prevention Policy (New Brunswick, N.J.: Rutgers Univ. Press, 1990).

55. See, for example, Barbara Ellen Smith, "Black Lung: The Social Production of Disease," in Perspectives in Medical Sociology, ed. Phil Brown (Prospect Heights, Ill: Waveland Press, 1992), 122-141.

56. Andrew Abbott, The System of Professions: An Essay on the Division of Expert Labor (Chicago: Univ. of Chicago Press, 1988), 136, 193.

57. Harry Nelson, "Mysterious Fever Now an Epidemic," Los Angeles Times, 31 May 1982, 1, 3, 20.

58. "'Homosexual Plague' Strikes New Victims," Newsweek, 23 August 1982, 10.

59. "Possible Transfusion-Associated Acquired Immune Deficiency Syndrome (AIDS)—California," Morbidity and Mortality Weekly Report 31 (10 December 1982): 652-654.

60. "Immunodeficiency among Female Sexual Partners of Males with Acquired Immune Deficiency Syndrome (AIDS)—New York," Morbidity and Mortality Weekly Report 31 (7 January 1983): 697-698.

61. Catherine Macek, "Acquired Immunodeficiency Syndrome Cause(s) Still Elusive," Journal of the American Medical Association 248 (24 September 1982): 1423-1431.

62. For biographical information on Sonnabend, see Bruce Nussbaum, Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight Against AIDS (New York: Atlantic Monthly Press, 1990), chapter 4.

63. Anne-Christine d'Adesky, "The Man Who Invented Safer Sex Returns," Out, summer 1992, 29.

64. J. A. Sonnabend, "Promiscuity Is Bad for Your Health: AIDS and the Question of an Infectious Agent," New York Native, 13 September 1982, 39.

65. On the importance of recruiting allies in scientific controversies, see Bruno Latour, Science in Action (Cambridge, Mass.: Harvard Univ. Press, 1987), chapter 4.

66. Barry Adkins, "Looking at AIDS in Totality: A Conversation with Joseph Sonnabend," New York Native, 7 October 1985, 22.

67. Latour has stressed that the effect of powerful scientific rhetoric is precisely to "isolate" opponents and make them feel "lonely"; see Science in Action, 33, 44.

68. Adkins, "Looking at AIDS in Totality," 24.

69. Joseph Sonnabend, Steven S. Witkin, and David T. Purtilo, "Acquired Immunodeficiency Syndrome, Opportunistic Infections, and Malignancies in Male Homosexuals: A Hypothesis of Etiologic Factors in Pathogenesis," Journal of the American Medical Association 249 (6 May 1983): 2370-2374. Reprinted in Irving J. Selikoff, Alvin S. Teirstein, and Shalom Z. Hirschman, eds., Acquired Immune Deficiency Syndrome, vol. 437 of Annals of the New York Academy of Sciences (New York: 1984); and in Helene M. Cole and George D. Lundberg, eds., AIDS: From the Beginning (Chicago: American Medical Association, 1986).

70. Sonnabend, Witkin, and Purtilo, "Acquired Immunodeficiency Syndrome."

71. J. A. Sonnabend, "The Etiology of AIDS," AIDS Research 1 (1983): 1-12.

72. James J. Goedert et al., "Amyl Nitrite May Alter T Lymphocytes in Homosexual Men," Lancet 1 (20 February 1982): 412-415.

73. Mass, "Major Meeting on the Epidemic," 11.

74. Lawrence Mass, "The Epidemic Continues: Facing a New Case Every Day, Researchers Are Still Bewildered," New York Native, 29 March 1982, 1, 12-15.

75. Gordon Murray, "The 'Gay Disease' Epidemic," Gay Community News, 9 October 1982, 8.

76. Bronski, "AIDing Our Guilt," 9.

77. G. Murray, "'Gay Disease' Epidemic," 11.

78. Editors' note, New York Native, 8-21 November 1982, 22.

79. Peter Seitzman, "Good Luck, Bad Luck: The Role of Chance in Contracting AIDS," New York Native, 8-21 November 1982, 22.

80. Michael Callen and Richard Berkowitz, "We Know Who We Are: Two Gay Men Declare War on Promiscuity," New York Native, 8 November 1982, 23-29, quote from 23.

81. Charles Jurrist, "In Defense of Promiscuity: Hard Questions about Real Life," New York Native, 6 December 1982, 27, 29.

82. D. Altman, AIDS in the Mind of America, 40-47; Patton, Sex and Germs, 119-158.

83. Michael Lynch, quoted in D. Altman, AIDS in the Mind of America, 137.

84. Lawrence Mass, "The Case against Medical Panic," New York Native, 17 January, 1983, 25.

85. Callen and Berkowitz, "We Know Who We Are," 29.

86. Dennis Altman, "Legitimation through Disaster: AIDS and the Gay Movement," in AIDS: The Burdens of History, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1988), 301-315. On the role of community in social movement mobilization, see Clarence Y. H. Lo, "Communities of Challengers in Social Movement Theory," in Frontiers in Social Movement Theory, ed. Aldon D. Morris and Carol McClurg Mueller (New Haven: Yale Univ. Press, 1992), 224-247.

87. See, for example, Jean-Robert Leonidas and Nicole Hyppolite, "Haiti and the Acquired Immunodeficiency Syndrome," Annals of Internal Medicine 98 (June 1982): 1020-1021. More generally, see Paul Farmer, AIDS and Accusation: Haiti and the Geography of Blame (Berkeley: Univ. of California Press, 1992).

88. Cathy Jean Cohen, "Power, Resistance and the Construction of Crisis: Marginalized Communities Respond to AIDS" (Ph.D. diss., University of Michigan, 1993), 472, 484.

89. Ibid., 450-451.

90. Robert C. Gallo, "HIV—The Cause of AIDS: An Overview on Its Biology, Mechanisms of Disease Induction, and Our Attempts to Control It," Journal of Acquired Immune Deficiency Syndromes 1 (December 1988): 521.

91. John M. Coffin, "Introduction to Retroviruses," in AIDS and Other Manifestations of HIV Infection, 2d ed., ed. Gary P. Wormser (New York: Raven Press, 1992), 37-56; Steve Connor and Sharon Kingman, The Search for the Virus, 2d ed. (London: Penguin Books, 1989), 29.

92. Connor and Kingman, Search for the Virus, 29.

93. Robert Gallo, Virus Hunting (New York: Basic Books, 1991), 133.

94. Joan Fujimura, "Constructing `Do-Able' Problems in Cancer Research: Articulating Alignments," Social Studies of Science 17 (May 1987): 257-293.

95. Gallo, Virus Hunting, 134.

96. Robert C. Gallo and Luc Montagnier, "AIDS in 1988," Scientific American 259 (October 1988): 40 ff.

97. Gallo, Virus Hunting, 148-149.

98. John Crewdson, "The Great AIDS Quest (Part 1: Science under the Microscope)," Chicago Tribune, 19 November 1989, C-1.

99. Jacques Leibowitch, A Strange Virus of Unknown Origin (New York: Ballantine Books, 1985), esp. chapter 1.

100. Quoted in Crewdson, "The Great AIDS Quest (Part 1)."

101. Ibid.; Connor and Kingman," Search for the Virus, 33.

102. Robert C. Gallo et al., "Isolation of Human T-Cell Leukemia Virus in Acquired Immune Deficiency Syndrome (AIDS)," Science 220 (20 May 1983): 865-867; F. Barré-Sinoussi et al., "Isolation of a T-Lymphotropic Retrovirus from a Patient at Risk for Acquired Immune Deficiency Syndrome (AIDS)," Science 220 (20 May 1983): 868-870.

103. Crewdson, "The Great AIDS Quest (Part 1)."

104. Jay Levy, interview by author, tape recording, San Francisco, 16 December 1993.

105. Gallo, Virus Hunting, 170.

106. Crewdson, "The Great AIDS Quest (Part 1)."

107. In November 1993, the Office of Research Integrity of the Department of Health and Human Services concluded a four-year investigation by dropping all accusations of scientific misconduct against Gallo. Gallo declared himself "completely vindicated," but the office said it was "acting reluctantly" in response to the adoption of a new, more stringent definition of what constitutes misconduct in science. See Philip J. Hilts, "Misconduct Charges Dropped against AIDS Virus Scientist," New York Times, 13 November 1993, A-1.

108. Lawrence K. Altman, "Federal Official Says He Believes Cause of AIDS Has Been Found," New York Times, 22 April 1984, 1.

109. Shilts, And the Band Played On, 451.

110. Lawrence K. Altman, "New U.S. Report Names Virus That May Cause AIDS," New York Times, 24 April 1984, C-1.

111. Levy, interview.

112. Connor and Kingman, Search for the Virus, 41.

113. Shilts, And the Bank Played On, 451.

114. John Crewdson, "The Great AIDS Quest (Part 4: `Could You Patent the Sun?')," Chicago Tribune, 19 November 1989, C-7.

115. "A Viral Competition over AIDS," New York Times, 26 April 1984, 22 (editorial).

116. Crewdson, "The Great AIDS Quest (Part 4)."

117. Robert C. Gallo et al., "Frequent Detection and Isolation of Cytopathic Retroviruses (HTLV-III) from Patients with AIDS and at Risk for AIDS," Science 224 (4 May 1984): 500-502.

118. Ibid., 502.

119. Gallo, "HIV—The Cause of AIDS," 523.

120. In one of the other papers, Gallo and his colleagues reported finding antibodies to the virus in three of five asymptomatic IV drug users and six of seventeen asymptomatic homosexual men. Again, there was no knowledge at that point about whether these individuals would develop AIDS. Moreover, the presence of antibodies to the virus was somewhat weaker evidence than the presence of the virus itself (M. G. Sarngadharan et al., "Antibodies Reactive with Human T-Lymphotropic Retroviruses [HTLV-III] in the Serum of Patients with AIDS," Science 224, 4 May 1984, 506-508).

121. Robert Gallo, interview by author, tape recording, Bethesda, Md., 3 November 1994.

122. Gallo, Virus Hunting, 277-280; Alfred S. Evans, "Does HIV Cause AIDS? An Historical Perspective," Journal of Acquired Immune Deficiency Syndromes 2 (April 1989): 107-113.

123. Richard M. Krause, "Koch's Postulates and the Search for the AIDS Agent," Reviews of Infectious Diseases 6 (March-April 1984): 272, 278. The original talk was presented at the International Congress for Infectious Diseases, Vienna, Austria, August 24-27, 1983.

124. Lawrence K. Altman, "How AIDS Researchers Strive for Virus Proof," New York Times, 23 October 1984, C-3.

125. James E. D'Eramo, "Federal Health Officials Announce Cause of AIDS," New York Native, 7 May 1984, 8.

126. Nathan Fain, "Researchers Track Down Virus They Believe Is AIDS' Cause," Advocate, 29 May 1984, 8-9.

127. Mausner and Kramer, Epidemiology—An Introductory Text, 185.

128. Jay A. Levy et al., "Isolation of Lymphocytopathic Retroviruses from San Francisco Patients with AIDS," Science 225, 24 August 1984, 840-842.

129. Levy, interview.

130. Levy et al., "Isolation of Lymphocytopathic Retroviruses," 225.

131. See, for example, Flossie Wong-Staal and Robert C. Gallo, "The Family of Human T-Lymphotropic Leukemia Viruses: HTLV-I as the Cause of Adult T Cell Leukemia and HTLV-III as the Cause of Acquired Immunodeficiency Syndrome," Blood 65 (February 1985), 253-263.

132. John Coffin et al., "Human Immunodeficiency Viruses," Science 232 (9 May 1986): 697 (letter to the editor).

133. On the stabilization of HIV, see also Paula A. Treichler, "AIDS: An Epidemic of Signification," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 31-70, esp. 57.

134. Steven Seidman, "Transfiguring Sexual Identity: AIDS and the Contemporary Construction of Homosexuality," Social Text 19/20 (fall 1988): 187-205.

135. On struggles over the ownership of social problems, see Joseph R. Gusfield, The Culture of Public Problems (Chicago: Univ. of Chicago Press, 1981).

136. On courtesy stigmas in AIDS, see Peter Conrad, "The Social Meaning of AIDS," Social Policy (summer 1986), 53. On the role of lesbians, see Amber Hollibaugh, "Lesbian Denial and Lesbian Leadership in the AIDS Epidemic: Bravery and Fear in the Construction of a Lesbian Geography of Risk," in Women Resisting AIDS: Feminist Strategies of Empowerment, ed. Beth E. Schneider and Nancy E. Stoller (Philadelphia: Temple Univ. Press, 1995), 219-230; Nancy Stoller, "Lesbian Involvement in the AIDS Epidemic: Changing Roles and Generational Differences," in Women Resisting AIDS, 270-285.

Chapter 2 HIV and the Consolidation of Certainty

1. Jonathan Elford, Robert Bor, and Pauline Summers, "Research into HIV and AIDS between 1981 and 1990: The Epidemic Curve," AIDS 5 (December 1991): 1515-1519, esp. 1516.

2. C. Self, W. Filardo, and W. Lancaster, "Acquired Immunodeficiency Syndrome (AIDS) and the Epidemic Growth of Its Literature," Scientometrics 17 (July 1989): 49-60, esp. 55. The increasing importance of AIDS research within biomedicine and scientific research as a whole is suggested by the "maps" of scientific research patterns generated by co-citation analysis, a quantitative technique that constructs linkages between articles that have been jointly cited by other researchers. See Henry Small and Edwin Greenlee, "A Co-Citation Study of AIDS Research," in Scholarly Communication and Bibliometrics, ed. Christine L. Borgman (Newbury Park, Calif.: Sage, 1990), 166-193.

3. See the semilogarithmic graph in I. N. Sengupta and Lalita Kumari, "Bibliometric Analysis of AIDS Literature," Scientometrics 20 (January 1991): 301.

4. The following figures are from Elford et al., "Research into HIV and AIDS," 1517, and are based on the indexing schema used in the Medline database of the National Library of Medicine.

5. "New AIDS Virus Found Different from First," New York Times, 18 December 1986, B-31.

6. Paula A. Treichler, "AIDS, HIV, and the Cultural Construction of Reality," in The Time of AIDS: Social Analysis, Theory, and Method, ed. Gilbert Herdt and Shirley Lindenbaum (Newbury Park, Calif.: Sage, 1992), 65-98, quote from 76.

7. Robert C. Gallo et al., "Frequent Detection and Isolation of Cytopathic Retroviruses (HTLV-III) from Patients with AIDS and at Risk for AIDS," Science 224 (4 May 1984): 500-502.

8. On the transformation of scientific facts into taken-for-granted knowledge, see, for example, Bruno Latour, Science in Action (Cambridge, Mass.: Harvard Univ. Press, 1987), 42-43. Montagnier's 1983 paper, initially almost ignored but increasingly recognized as the first report of the discovery of HIV, ended up being cited even more often than Gallo's 1984 paper: Montagnier's paper was cited 147 times in 1984, 366 times in 1985, 416 times in 1986, and 399 times in 1987. My content analysis focuses on Gallo's 1984 paper only: For my purposes, it was more important to study citations of Gallo's work, since he has tended to receive credit for confirming that the virus causes AIDS, than to study citations of Montagnier's work, since he has tended to be credited instead for the discovery of the virus (see Small and Greenlee's conclusions on this point, "Co-Citation Study of AIDS Research," 185). In practice, my content analysis revealed that the two papers were very frequently co-cited, often along with Levy's 1984 article in Science. See also Alison Rawling, "The AIDS Virus Dispute: Awarding Priority for the Discovery of the Human Immunodeficiency Virus (HIV)," Science, Technology, & Human Values 19 (summer 1994): 342-360.

9. A chi-square test using the data in table 1 (comparing the five categories over the three years) confirms that the shift is highly statistically significant (c 2 = 68.5, df = 8, p < .001).

10. Council on Scientific Affairs of the Division of Scientific Activities of the American Medical Association, "Acquired Immunodeficiency Syndrome: Commentary," Journal of the American Medical Association 252 (19 October 1984): 2039.

11. James W. Curran et al., "The Epidemiology of AIDS: Current Status and Future Prospects," Science 229 (September 1985): 1352.

12. Gerald V. Quinnan Jr. et al., "Mechanisms of T-Cell Functional Deficiency in the Acquired Immunodeficiency Syndrome," Annals of Internal Medicine 103 (November 1985): 710.

13. "AIDS and HTLV Type III," Lancet 1 (5 May 1984): 1031 (editorial note); "The Cause of AIDS?" Lancet 1 (12 May 1984): 1053-1054 (editorial), quote from 1054.

14. Robert S. Klein et al., "Oral Candidiasis in High-Risk Patients as the Initial Manifestation of the Acquired Immunodeficiency Syndrome," New England Journal of Medicine 311 (9 August 1984): 354.

15. Arthur J. Ammann, "Etiology of AIDS," Journal of the American Medical Association 252 (14 September 1984): 1281-1282 (letter to the editor).

16. This was confirmed by performing separate chi-squares (on the five citation categories vs. the two authorship categories) for each of the three years reported in table 2. In each case, the differences between articles without an author from the Gallo group and articles with such an author were not statistically significant (1984: c 2 = 5.5, df = 4, p < .30; 1985: c 2 = 1.7, df = 4, p<.80; 1986: c 2 = 1.2, df = 4, p < .90).

17. Françoise Barré-Sinoussi et al., "Isolation of Lymphadenopathy-Associated Virus (LAV) and Detection of LAV Antibodies from US Patients with AIDS," Journal of the American Medical Association 253 (22-29 March 1985): 1737.

18. Luc Montagnier, "Lymphadenopathy-Associated Virus: From Molecular Biology to Pathogenicity," Annals of Internal Medicine 103 (November 1985): 693.

19. Chi-square tests were performed separately for the 1985 and 1986 data. Data from table 3 were combined into 2 × 2 tables: explicit unqualified references vs. all other references (combined); and those citing early papers vs. those citing later research. In 1985 there was no statistically significant difference between those citing early papers and those citing later research, in terms of the tendency to make explicit unqualified references (c 2 = .0028, df = 1, p < .95). Similarly, in 1986, the difference was not statistically significant (c 2 = 1.84, df = 1, p < .20).

20. This shift is highly significant statistically, as confirmed by a chi-square test of the "Citations of early papers" column (the four citation categories in 1985 vs. the four categories in 1986): c 2 = 332.4, df = 3, p < .001.

21. Samuel Broder and Robert C. Gallo, "A Pathogenic Retrovirus (HTLV-III) Linked to AIDS," New England Journal of Medicine 311 (15 November 1984): 1292-1297; Flossie Wong-Staal and Robert C. Gallo, "Human T-Lymphotropic Retroviruses," Nature 317 (3-9 October 1985): 395-403.

22. S. Zaki Salahuddin et al., "Isolation of Infectious Human T-Cell Leukemia/Lymphotropic Virus Type III (HTLV-III) from Patients with Acquired Immunodeficiency Syndrome (AIDS) or AIDS-Related Complex (ARC) and from Healthy Carriers: A Study of Risk Groups and Tissue Sources," Proceedings of the National Academy of Sciences 82 (August 1985), 5530-5534.

23. Ibid., 5533.

24. Flossie Wong-Staal and Robert C. Gallo, "The Family of Human T-Lymphotropic Leukemia Viruses: HTLV-I as the Cause of Adult T Cell Leukemia and HTLV-III as the Cause of Acquired Immunodeficiency Syndrome," Blood 65 (February 1985): 253-263.

25. This study, coauthored by Gallo, was reported in Harvey J. Alter et al., "Transmission of HTLV-III Infection from Human Plasma to Chimpanzees: An Animal Model for AIDS," Science 226 (2 November 1984), 549-552.

26. Wong-Staal and Gallo, "The Family of Human T-Lymphotropic Leukemia Viruses," 259.

27. See, for example, the summary of the evidence in S. Harada, Y. Koyanagi, and N. Yamamoto, "Infection of HTLV-III/LAV in HTLV-I-Carrying Cells MT-2 and MT-4 and Application in a Plaque Assay," Science 229 (9 August 1985): 563-566.

28. For example, CDC researcher Paul Feorino and his coauthors, reporting on an early transfusion study in Science in July 1984, noted that "the ultimate proof that LAV or any other virus is the cause of AIDS requires studies that cumulatively fulfill the modern equivalent of Koch's postulates." See P. M. Feorino et al., "Lymphadenopathy-Associated Virus Infection of a Blood Donor-Recipient Pair with Acquired Immunodeficiency Syndrome," Science 225 (6 July 1984): 70-71.

29. Wong-Staal and Gallo, "The Family of Human T-Lymphotropic Leukemia Viruses," 259.

30. Jeffrey Laurence et al., "Lymphadenopathy-Associated Viral Antibody in AIDS," New England Journal of Medicine 311 (15 November 1984), 1269-1273.

31. Harada et al., "Infection of HTLV-III/LAV," 563.

32. See "Chimp Finally Shows AIDS Symptoms," Science 270 (13 October 1995): 223.

33. Donald P. Francis et al., "Infection of Chimpanzees with Lymphadenopathy-Associated Virus," Lancet 2 (1 December 1984): 1276-1277 (letter to the editor).

34. For an early example, see Jerome E. Groopman et al., "Virologic Studies in a Case of Transfusion-Associated AIDS," New England Journal of Medicine 311 (29 November 1984): 1419.

35. Paul M. Feorino et al., "Transfusion-Associated Acquired Immunodeficiency Syndrome," New England Journal of Medicine 312 (16 May 1985): 1293-1296.

36. H. W. Jaffe et al., "Transfusion-Associated AIDS: Serologic Evidence of Human T-Cell Leukemia Virus Infection in Donors," Science 223 (23 March 1984): 1309-1311.

37. The crucial differences are (1) that Feorino and his co-researchers actually isolated the virus, instead of simply assaying for antibodies; and (2) that Feorino and his associates found the virus more consistently both in donors and recipients than Jaffe and his associates had found antibodies in either group. In fact, buried in the paper by Jaffe et al. was the admission that they could find HTLV-I antibodies in only three of the eight transfusion recipients for whom serum samples were available (p. 1310).

38. Robert C. Gallo, "AIDS: Words from the Front," interview by Anthony Liversidge and Celia Farber, Spin, February 1988, 56.

39. S. Pahwa et al., "Influence of the Human T-Lymphotropic Virus/ Lymphadenopathy-Associated Virus on Functions of Human Lymphocytes: Evidence for Immunosuppressive Effects and Polyclonal B-Cell Activation by Banded Viral Preparations," Proceedings of the National Academy of Sciences 82 (December 1985): 8198-8202.

40. R. F. Wykoff, E. R. Pearl, and F. T. Saulsbury, "Immunologic Dysfunction in Infants Infected through Transfusion with HTLV-III," New England Journal of Medicine 312 (31 January 1985): 294-296.

41. On bandwagons in science, see Joan H. Fujimura, "The Molecular Biological Bandwagon in Cancer Research: Where Social Worlds Meet," Social Problems 35 (June 1988): 261-283.

42. H. M. Collins, "Certainty and the Public Understanding of Science: Science on Television," Social Studies of Science 17 (November 1987): 692.

43. "Revision of Case Definition of Acquired Immunodeficiency Syndrome for National Reporting—United States," Morbidity and Mortality Weekly Report 34 (28 June 1985): 373-375.

44. Antibody-negative patients could still be included, however, if they had a positive result on another test (such as a viral culture) or if they had a low ratio of helper T cells to suppressor T cells. Moreover, the CDC continued to count as AIDS cases patients with diseases included on the list who had simply never been tested for HIV antibodies.

45. Karen Wright, "Mycoplasmas in the AIDS Spotlight," Science 248 (11 May 1990): 682-683.

46. Lawrence K. Altman, "AIDS Findings Made by a Virus Expert," New York Times, 3 August 1986, 1.

47. Wright, "Mycoplasmas in the AIDS Spotlight," 683.

48. See Shyh-Ching Lo et al., "Enhancement of HIV-1 Cytocidal Effects in CD4+ Lymphocytes by the AIDS-Associated Mycoplasma," Science 251 (1 March 1991): 1074-1076.

49. On the role of the news media as a "reflexive" institution whose "accounts are embedded in the very reality that they characterize, record, or structure," see Gaye Tuchman, Making News: A Study in the Construction of Reality (New York: Free Press, 1978), 189.

50. See the Methodological Appendix for details concerning article selection and coding.

51. The term "the AIDS virus" was actually used most often in the second half of 1985, which was also when news coverage of AIDS soared following the announcement that Rock Hudson suffered from the syndrome.

52. The trend over time toward implicit etiological claims-making, shown in table 4, was found to be highly significant statistically. (Implicit claims were compared to all other claims combined, over the five time periods [a 2X5 table] [c 2=31.1, df=4, p < .001].)

53. Judy Glass, "L.I. Cases of AIDS Reported on Rise," New York Times, 3 June 1984, Section 11, p. 1.

54. Lawrence Altman, "How AIDS Researchers Strive for Virus Proof," New York Times, 23 October 1984, C-3.

55. Lawrence K. Altman, "AIDS Immunization Tested on Humans," New York Times, 17 December 1986, A-1.

56. Chuck Frutchey, letter, 10 December 1984, included in "AIDS: An Infection Control and General Information Packet for Health Care Providers" (San Francisco: San Francisco Bay Area Chapter of the Association for Practitioners in Infection Control and the San Francisco AIDS Foundation, 1984).

57. Dennis Altman, AIDS in the Mind of America (Garden City, N.J.: Anchor Press, 1986), 182.

58. Paul Cameron, "Homosexuality: A Deathstyle, Not a Lifestyle," Moral Majority Report, September 1983, 7.

59. D. Altman, AIDS in the Mind of America, 64.

60. See, for example, the leaflet "AIDS Is Germ Warfare by the U.S. Gov't against Gays and Blacks!" (San Francisco: Information Network against War & Fascism, n.d. [circa 1987], photocopy); James Brooke, "In Cradle of AIDS Theory, a Defensive Africa Sees a Disguise for Racism," New York Times, 19 November 1987, B-13; Tom Curtis, "The Origin of AIDS," Rolling Stone, 19 March 1992, 54; Tom Curtis, "Did a Polio Vaccine Experiment Unleash AIDS in Africa?" Washington Post, 5 April 1992, C-3 (op-ed); Charles Gilks, "AIDS, Monkeys and Malaria," Nature 354 (28 November 1991): 262 (commentary); Red Jackson, "Hitler's Labs Created AIDS Virus," Sun, 3 January 1989, 7; Robert Lederer, "Chemical-Biological Warfare, Medical Experiments, and Population Control," Covert Action Information Bulletin, summer 1987, 33-42; Robert Lederer, "Origin and Spread of AIDS: Is the West Responsible?" Covert Action Information Bulletin, summer 1987, 43-54; Brian Martin, "Peer Review and the Origin of AIDS—A Case Study in Rejected Ideas," BioScience 43 (October 1993): 624-627 (roundtable discussion); Gary Null, "AIDS: A Man-Made Plague?" Penthouse, January 1989, 160; Louis Pascal, What Happens When Science Goes Bad. The Corruptionof Science and the Origin of AIDS: A Study in Spontaneous Generation, working paper no. 9, University of Wollongong, Australia: Science and Technology Analysis Research Programme, December 1991; "Soviets Say CIA Created AIDS to Use in Biological Warfare," San Francisco Examiner, 31 October 1985, A-9; Pearce Wright, "Smallpox Vaccine 'Triggered Aids Virus,'" London Times, 11 May 1987, 1.

61. Susan M. Blake and Elaine Bratic Arkin, AIDS Information Monitor: A Summary of National Public Opinion Surveys on AIDS: 1983 through 1986 (Washington, D.C.: American Red Cross, 1983).

62. Of course, the danger was that, by encouraging people at risk for AIDS to take the test, AIDS organizations might make a quarantine more feasible simply by identifying more people who carried the virus. For this reason, the pros and cons of "taking the test" were fiercely debated in gay communities in the mid-1980s, and many groups (particularly on the East Coast, where suspicions ran higher) promoted the message "Don't take the test." Other groups rallied behind the idea of anonymous testing, which provided people with test results while protecting their identities. Eventually, a consensus in favor of anonymous testing materialized among the AIDS organizations, but not until the tests were shown to be relatively accurate, and never fully until the advent of "early intervention" therapies in the late 1980s.

63. See Cindy Patton, Inventing AIDS (New York: Routledge, 1990), 42.

64. D. Altman, AIDS in the Mind of America, 153.

65. For a somewhat contrasting perspective, see Patton, Inventing AIDS, 42.

66. Nathan Fain, "The Proof Is In on a Virus," Advocate, 4 September 1984, 8-9.

67. Christine Guilfoy, "HTLV-III Test Availability Elicits Mixed Response," Gay Community News, 27 April 1985, 3.

68. John Lauritsen and Hank Wilson, Poppers & AIDS, 2d ed. (San Francisco: Committee to Monitor Poppers, 1985).

69. John Lauritsen, "The Drugs Connection," Gay Community News, 12 October 1986, 5 (op-ed).

70. For representative criticism of Ortleb by an AIDS activist, see Douglas Crimp, "How to Have Promiscuity in an Epidemic," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 237-270, esp. 238. The best analysis of the role of the Native in covering AIDS is provided by James Kinsella in chapter 2 of Covering the Plague: AIDS and the American Media (New Brunswick, N.J.: Rutgers Univ. Press, 1989).

71. J. A. Sonnabend and S. Saadoun, "What Does a Positive Test Mean?" New York Native, 24 September-7 October 1984, 19-20.

72. Barry Adkins, "Looking at AIDS in Totality: A Conversation with Joseph Sonnabend," New York Native, 7 October 1985, 24.

73. James E. D'Eramo, "Discovering the Cause of AIDS: An Interview with Dr. Robert C. Gallo," New York Native, 27 August 1984, 17, 18.

74. Jane Teas, "Could AIDS Agent Be a New Variant of African Swine Fever Virus?" Lancet 1 (23 April 1983): 923 (letter to the editor).

75. J. Colaert et al., "African Swine Fever Virus Antibody Not Found in AIDS Patients," Lancet 1 (14 May 1983): 1098 (letter to the editor); Emmanuel Arnoux et al., "AIDS and African Swine Fever," Lancet 2 (9 July 1983): 110 (letter to the editor).

76. Council on Scientific Affairs of the Division of Scientific Activities of the American Medical Association, "Acquired Immunodeficiency Syndrome: Commentary."

77. Jane Teas, "An AIDS Odyssey," New York Native, 17 December 1984, 15.

78. Ibid.

79. Kinsella, Covering the Plague, 38-44; D. Altman, AIDS in the Mind of America, 52.

80. See Kinsella's account in Covering the Plague, 41-42.

81. Lawrence K. Altman, "Studies Fail to Link AIDS with Swine Fever," New York Times, 19 September 1985, B-15.

82. Crimp, "How to Have Promiscuity in an Epidemic," 238.

83. Helene M. Cole and George D. Lundberg, eds., AIDS: From the Beginning (Chicago: American Medical Association, 1986).

84. Institute of Medicine, National Academy of Sciences, Confronting AIDS: Directions for Public Health, Health Care, and Research (Washington, D.C.: National Academy Press, 1986), quote from viii. For an extended critique of the report, see Alfred J. Fortin, "AIDS, Surveillance and Public Policy: The Politics of Medical Discourse" (Ph.D. diss., University of Hawaii, 1989).

85. Institute of Medicine, National Academy of Sciences, Confronting AIDS, 40.

86. Ibid., 195.

87. Ibid., 177-259.

88. John Lauritsen, "Caveat Emptor: The Report of the National Academy of Sciences on AIDS Is Filled with Misinformation," New York Native, 9 March 1987, 32.

Chapter 3 Reopening The Causation Controversy

1. Joan Hideko Fujimura, "Bandwagons in Science: Doable Problems and Transportable Packages as Factors in the Development of the Molecular Genetic Bandwagon in Cancer Research" (Ph.D. diss., University of California at Berkeley, 1986).

2. This includes sixty-nine published in the 1970s (twenty with Duesberg as first author) and fifty-nine in the 1980s (eighteen as first author). Medline dates back to 1965. (In some cases, Medline does not include references to book chapters or to foreign journals, so it may understate an author's publication history.)

3. See Eugene Garfield, Citation Indexing—Its Theory and Application in Science, Technology, and Humanities (New York: John Wiley & Sons, 1979), esp. 244 ff. For a skeptical perspective on the use of citation counts, see David Edge, "Quantitative Measures of Communication in Science: A Critical Review," History of Science 17 (June 1979): 102-134.

4. Duesberg was born in 1936, Gallo in 1937. Duesberg received his Ph.D. in 1963, the same year that Gallo received his medical degree.

5. Robert Teitelman, "The Baffling Standoff in Cancer Research," Forbes, 15 July 1985, 110.

6. Peter H. Duesberg, "Activated Proto-Onc Genes: Sufficient or Necessary for Cancer?" Science 228 (10 May 1985): 669-677.

7. Peter H. Duesberg, "Retroviruses as Carcinogens and Pathogens: Expectations and Reality," Cancer Research 47 (1 March 1987): 1199-1220, quotes from 1199-1200.

8. Peter Duesberg, interview by author, tape recording, Berkeley, Calif., 28 September 1992.

9. Duesberg, "Retroviruses as Carcinogens and Pathogens," 1212-1213.

10. Ibid., 1215.

11. See Bruno Latour, Science in Action (Cambridge, Mass.: Harvard Univ. Press, 1987), 40-41.

12. John Lauritsen, "First Things First: Some Thoughts on the `AIDS Virus' and AZT," New York Native, 1 June 1987, 1, 14-16 (cover story).

13. This was a section heading in Lauritsen's article (ibid., 14). For debates surrounding the safety and efficacy of AZT, see part two of this book.

14. Latour, "Science in Action," 44.

15. Lauritsen, "First Things First," 14-15.

16. John Lauritsen, "Saying No to HIV: An Interview with Prof. Peter Duesberg, Who Says, `I Would Not Worry about Being Antibody Positive,'" New York Native, 6 July 1987, 1, 17-25 (cover story), quote from 24.

17. Ibid., 21.

18. Ibid.

19. James Kinsella, Covering the Plague: AIDS and the American Media (New Brunswick, N.J.: Rutgers Univ. Press, 1989), 46.

20. Charles Shively, "AIDS and Genes," Gay Community News, 4 October 1987, 3, 13, 14.

21. Katie Leishman, "AIDS and Insects," The Atlantic, September 1987, 56-72, quote from 71.

22. "Channel 4 Programme Challenges Established Theories on Aids," Origin Universal News Services, 12 November 1987.

23. Peter Duesberg, "A Challenge to the AIDS Establishment," Bio/Technology 5 (November 1987): 1244.

24. See, for example, Duesberg's brief appearance as a quotable authority in John Crewdson, "Weak Immune System May Open AIDS Door," Chicago Tribune, 20 December 1987, 1.

25. Lori Kenschaft, "Why Look at HIV?" Gay Community News, 20 December 1987, 3. See also "Scientist Disputes HIV Theory of AIDS," Bay Area Reporter, 24 December 1987, 16.

26. Celia Farber, "AIDS: Words from the Front," Spin, January 1988, 43-44, 73.

27. Duesberg was referring to an incident that had occurred in August the previous year, when arsonists set fire to the Florida home of three antibody-positive hemophiliac brothers after the family waged a successful legal battle to keep the boys from being excluded from public school. See David L. Kirp et al., Learning by Heart: AIDS and Schoolchildren in America's Communities (New Brunswick, N.J.: Rutgers, 1989), 1-4.

28. Farber, "AIDS: Words from the Front," 73.

29. William Booth, "A Rebel without a Cause of AIDS," Science 239 (25 March 1988): 1485.

30. Peter H. Duesberg, "In Pursuit of Harmless Viruses: The Last Stand of the Microbe Hunters," Raum & Zeit 1, no. 5 (1990): 4-8, quote from 6.

31. Ibid., 5, 7-8.

32. Pierre Bourdieu, "The Specificity of the Scientific Field and the Social Conditions of the Progress of Reason," Social Science Information 14 (December 1975): 19-47, esp. 30.

33. Duesberg, "In Pursuit of Harmless Viruses," 1.

34. Joe Nicholson, "AIDS Experts on Wrong Track: Top Doc," New York Post, 7 January 1988, 9.

35. Phillip M. Boffey, "A Solitary Dissenter Disputes Cause of AIDS," New York Times, 12 January 1988, C-3.

36. Joel N. Shurkin, "The AIDS Debate: Another View," Los Angeles Times, 18 January 1988, II-4.

37. Anthony Liversidge and Celia Farber, "AIDS: Words from the Front," Spin, February 1988, 56-57, 67, 70.

38. Booth, "A Rebel without a Cause of AIDS," 1485.

39. Liversidge and Farber, "AIDS: Words from the Front," 57, 67.

40. Ibid., 57.

41. Ibid., 67.

42. Quote of the Week, Gay Community News, 27 December 1987, 2.

43. Evidence on progression from a state of asymptomatic HIV infection to an AIDS diagnosis came primarily from combined retrospective and longitudinal studies of gay men whose blood samples were taken initially for hepatitis B vaccine trials in the early 1980s but were subsequently analyzed for HIV antibodies. As time passed, more and more of these HIV-infected men developed AIDS, leading scientists to boost upward both their predictions of the percentage of infected people who would eventually sicken and their assessments of the mean time between infection and the onset of illness.

44. David Perlman, "Positive AIDS Tests for Half of Gays in Study," San Francisco Chronicle, 1 January 1986.

45. These developments are discussed in detail in part two of this book.

46. Randy Shilts, "Theory That AIDS Is a `Super Syphilis,'" San Francisco Chronicle, 13 January 1988, A-7.

47. Caden Gray, "Biologist Brings Message to Castro," San Francisco Sentinel, 15 January 1988, 7.

48. Roger Rapaport, "Dissident Scientist's AIDS Theory Angers Colleagues," Oakland Tribune, 31 January 1988, B-4.

49. Ann Giudici Fettner, "Dealing with Duesberg: Bad Science Makes Strange Bedfellows," Village Voice, 2 February 1988, 25.

50. Quote of the Week, Gay Community News, 7 February 1988, 2.

51. Fettner, "Dealing with Duesberg," 25.

52. Jack Anderson, "AIDS Researcher Won't Confront Alternate Theory," Newsday, 9 February 1988, 64.

53. Booth, "Rebel without a Cause of AIDS," 1486.

54. Philip M. Boffey, "Reagan Names 12 to Panel on AIDS," New York Times, 24 July 1987, A-12.

55. Drew Hopkins, "Peter Duesberg and the Media," Christopher Street, April 1988, 59.

56. Katie Leishman, "The AIDS Debate That Isn't," Wall Street Journal, 26 February 1988, 14 (op-ed).

57. My account of the AmFAR forum is based primarily on the summary prepared from a transcript and published as: Harold S. Ginsberg, "Scientific Forum on AIDS: A Summary (Does HIV Cause AIDS?)," Journal of Acquired Immune Deficiency Syndromes 1 (April 1988): 165-172.

58. Quoted in Kathleen McAuliffe, "The Etiology of AIDS," AIDS Targeted Information Newsletter 2 (May 1988): 1-3 (editorial).

59. Ginsberg, "Scientific Forum on AIDS," 168.

60. Michael Specter, "Panel Rebuts Biologist's Claims on Cause of AIDS," Washington Post, 10 April 1988, A-4.

61. Ginsberg, "Scientific Forum on AIDS," 169.

62. Ibid., 170.

63. Ibid., 172.

64. Ann Giudici Fettner, "Duesberg's AIDS Theories Get Scrutiny from Peers," San Francisco Sentinel, 15 April 1988, 6; John Lauritsen, "Kangaroo Court Etiology," New York Native, 9 May 1988, 14-19.

65. An exception was Michael Specter's article in the Washington Post, a short but hard-hitting piece that left little doubt about Specter's opinion that Duesberg had lost the debate (Specter, "Panel Rebuts Biologist's Claims").

66. William Booth, "Duesberg Gets His Day in Court," Science 240 (15 April 1988): 279.

67. Rebecca Ward, "Mainstream Scientists Confront Unorthodox View of AIDS," Nature 332 (14 April 1988): 574.

68. Peter Duesberg, "AIDS and the `Innocent' Virus," New Scientist, 28 April 1988, 34-35.

69. "And Yet It Kills," New Scientist, 14 April 1988, 17 (editorial).

70. Harvey Bialy, letter to Daniel Koshland, 2 March 1988.

71. W. Blattner, R. C. Gallo, and H. M. Temin, "Blattner and Colleagues Respond to Duesberg," Science 241 (29 July 1988): 514-517, quote from 517.

72. Robert Gallo, interview by author, tape recording, Bethesda, Md., 3 November 1994.

73. W. Blattner, R. C. Gallo, and H. M. Temin, "HIV Causes AIDS," Science 241 (29 July 1988): 515.

74. Peter Duesberg, "Duesberg's Response to Blattner and Colleagues," Science 241 (29 July 1988): 515-516, quote from 516.

75. Drew Hopkins, "Peter Duesberg and the Media," Christopher Street, April 1988, 52-59; Thomas Ryan, "AIDS as Career," Christopher Street, May 1988, 28-35.

76. Rex Wockner, "Dissident Scientists Battle AIDS Dogmas," In These Times, 4 May 1988, 5.

77. "Alternative Therapy" (segment by Spencer Michels, KQED San Francisco), MacNeil/Lehrer News Hour, 3 May 1988.

78. Jack Anderson, "Doubts Raised about Virus as a Cause of AIDS," Newsday, 27 June 1988, 54.

79. Jeff Miller, "AIDS Heresy," Discover, June 1988, 63.

80. "Alternative Therapy."

81. Ryan, "AIDS as Career," 32.

82. Robert C. Gallo, "HIV—The Cause of AIDS: An Overview on Its Biology, Mechanisms of Disease Induction, and Our Attempts to Control It," Journal of Acquired Immune Deficiency Syndromes 1 (December 1988): 521-535, quotes from 523.

83. Institute of Medicine, National Academy of Sciences, Confronting AIDS: Update 1988 (Washington, D.C.: National Academy Press, 1988), vi.

84. Ibid., 33.

85. Presidential Commission on the Human Immunodeficiency Virus Epidemic, Report of the Presidential Commission on the Human Immunodeficiency Virus Epidemic, Submitted to the President of the United States, June 24, 1988 (Washington, D.C., 1988), xvii.

86. William Booth, "AIDS Paper Raises Red Flag at PNAS," Science 243 (10 February 1989): 733.

87. Evelleen Richards, Vitamin C and Cancer: Medicine or Politics? (New York: St. Martin's, 1991), 90-91, 178-180.

88. Peter H. Duesberg, "Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome: Correlation but Not Causation," Proceedings of the National Academy of Sciences 86 (February 1989): 755-764.

89. Peter H. Duesberg, "AIDS Epidemiology: Inconsistencies with Human Immunodeficiency Virus and with Infectious Disease," Proceedings of the National Academy of Sciences 88 (February 1991): 1575-1579.

90. Booth, "AIDS Paper Raises Red Flag," 733.

91. Anthony Liversidge, "PNAS Publication of AIDS Article Spurs Debate over Peer Review," The Scientist, 3 April 1989, 1, 4, 5, 19.

92. For a discussion of debates about causation at the conference that took place in Montreal the previous year, see Paula A. Treichler, "AIDS, HIV, and the Cultural Construction of Reality" in The Time of AIDS: Social Analysis, Theory, and Method, ed. Gilbert Herdt and Shirley Lindenbaum (Newbury Park, Calif.: Sage, 1992), 65-98.

93. Montagnier presented his case formally in: M. Lemaître et al., "Protective Activity of Tetracycline Analogs against the Cytopathic Effect of the Human Immunodeficiency Viruses in CEM Cells," Research in Virology 141 (January-February 1990): 5-16.

94. Philip J. Hilts, "Evidence Is Said to Increase on Microbe's Role in AIDS," New York Times, 22 June 1990, A-18.

95. Michael Miller, "Doctors Offer Witch's Brew of Alternative Aids Treatments," Reuters Library Report, 22 June 1990. This report carried a San Francisco dateline.

96. "The AIDS Catch" (documentary produced and directed by Joan Shenton, shown on Channel 4, British television), Meditel Productions, 5 March 1990.

97. Jad Adams, AIDS: The HIV Myth (New York: St. Martin's, 1989).

98. "The AIDS Catch."

99. Peter H. Duesberg and Bryan J. Ellison, "Is the AIDS Virus a Science Fiction? Immunosuppressive Behavior, Not HIV, May Be the Cause of AIDS," Heritage Foundation Policy Review, summer 1990, 40-51.

100. Bryan Ellison, interview by author, Berkeley, Calif., 1 October 1992.

101. Adam Meyerson, "Is HIV the Cause of AIDS?" Heritage Foundation Policy Review, fall 1990, 70 (editor's introduction to a special letters section).

102. Duesberg and Ellison, "Is the AIDS Virus a Science Fiction?" 41.

103. Ibid., 43.

104. Institute of Medicine, National Academy of Sciences, Mobilizing against AIDS (Cambridge, Mass.: Harvard Univ. Press, 1989), app. B. First printed in the Morbidity and Mortality Weekly Report 36, suppl. 1 (14 August 1987): 3S-15S

105. Ibid., 288.

106. Duesberg and Ellison, "Is the AIDS Virus a Science Fiction?" 46.

107. Robert S. Root-Bernstein, "AIDS and Kaposi Sarcoma Pre-1979," Lancet 335 (21 April 1990): 969 (letter to the editor).

108. Duesberg and Ellison, "Is the AIDS Virus a Science Fiction?" 48.

109. Both Duesberg and Ellison agreed in retrospect that it was Ellison who advocated inclusion of the immune overload argument, while Duesberg at this point became suspicious of the linkage between sexual practices and AIDS. See the discussion of the evolution of Duesberg's causal argument after this point, in chapter 4.

110. Duesberg and Ellison, "Is the AIDS Virus a Science Fiction?" 49.

111. This decidedly odd reference to malnourished homosexuals is perhaps an allusion to the "gay bowel syndrome," which was often mentioned in the early medical literature on AIDS during the heyday of the immune overload hypothesis (see chapter 1).

112. Duesberg and Ellison, "Is the AIDS Virus a Science Fiction?" 48.

113. John Lauritsen, letter to Peter Duesberg, 27 March 1990.

114. Duesberg and Ellison, "Is the AIDS Virus a Science Fiction?" 49.

115. Ibid., 50-51.

116. Ibid.

117. Howard M. Temin, "Proof in the Pudding," Heritage Foundation Policy Review, fall 1990, 71-72 (letter to the editor).

118. Warren Winkelstein Jr., "Evidence for HIV," Heritage Foundation Policy Review, fall 1990, 71 (letter to the editor).

119. Michael Fumento, "Duesberg Injected," Heritage Foundation Policy Review, fall 1990, 80-81 (letter to the editor).

120. Peter H. Duesberg and Bryan J. Ellison, "Peter H. Duesberg and Bryan J. Ellison Respond," Heritage Foundation Policy Review, fall 1990, 81-83 (letter to the editor).

121. Ibid.

122. Alfred S. Evans, "Does HIV Cause AIDS? An Historical Perspective," Journal of Acquired Immune Deficiency Syndromes 2 (April 1989): 107-113; Peter Duesberg, "Does HIV Cause AIDS?" Journal of Acquired Immune Deficiency Syndromes 2 (October 1989): 514-515 (letter to the editor); Alfred S. Evans, "Author's Reply," Journal of Acquired Immune Deficiency Syndromes 2 (October 1989): 515-517 (letter to the editor).

123. Evans, "Does HIV Cause AIDS?" 107, 112.

124. Duesberg cited a New York Native article by Joseph Sonnabend in his "HIV Is Not the Cause of AIDS"; he cited Celia Farber, Katie Leishman, and John Lauritsen in Duesberg, "Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome"; he cited Jad Adams, Farber, and Lauritsen in P. H. Duesberg, "AIDS: Non-Infectious Deficiencies Acquired by Drug Consumption and Other Risk Factors," Research in Immunology 141 (January 1990): 5-11; and so on.

125. Robert Root-Bernstein, "Do We Know the Cause(s) of AIDS?" Perspectives in Biology and Medicine 33 (summer 1990): 480-500.

126. Robert Gallo, Virus Hunting (New York: Basic Books, 1991).

127. Ibid., 276, 277.

128. Gallo, interview.

129. Gallo, Virus Hunting, 286, 296.

130. Ibid., 285, 289.

131. Garry Abrams, "Hero or Heretic? Peter Duesberg, One of the Country's Top Virus Specialists, Risks Reputation with Theory That HIV Doesn't Cause AIDS," Los Angeles Times, 21 May 1991, E-I.

132. Kim Painter, "A Controversial 'Spin' on AIDS," USA Today, 21 March 1989, D-5.

133. Charles Trueheart, "Down at the Healers," Washington Post, 24 July 1990, E-7.

134. Nathaniel S. Lehrman, "AIDS Controversy and the Media," Lies of Our Times, July-August 1991, 20.

135. John Lauritsen, "Science by Press Release," New York Native, 21 August 1989, 20-22; John Lauritsen, "The 'AIDS' War: Censorship and Propaganda Dominate Media Coverage of the Epidemic," New York Native, 12 August 1991, 14-18.

136. Michael C. Botkin, "The Great KS Debate," Bay Area Reporter, 29 August 1991, 19, 24.

137. Ralph Garrett, "Blind Trust," San Diego Gay Times, 20 June 1991, 16 (letter to the editor).

138. Stephen Hilgartner, "The Dominant View of Popularization: Conceptual Problems, Political Uses," Social Studies of Science 20 (August 1990): 519-539, quote from 522.

139. See note 124 above.

140. Hilgartner, "Dominant View of Popularization," 524.

Chapter 4 The Debate That Wouldn't Die

1. Charles A. Thomas Jr., telephone interview by author, 27 October 1992.

2. Charles A. Thomas Jr., form letter, 18 June 1991.

3. Group for the Scientific Reappraisal of the HIV/AIDS Hypothesis, unpublished letter, n.d. (ca. June 1991).

4. A different, and longer, version of the letter ultimately was published in Science, more than two and a half years later: Eleen Baumann et al., "AIDS Proposal," Science 267 (17 February 1995): 945-946 (letter to the editor).

5. Tony Perry, "San Diego at Large: Is It Politically Incorrect to Challenge AIDS-HIV Link?" Los Angeles Times, 9 September 1991, B-1, San Diego County edition.

6. Thomas J. DeLoughry, "40 Scientists Call on Colleagues to Re-evaluate AIDS Theory," Chronicle of Higher Education, 4 December 1991, A-9.

7. John Maddox, "AIDS Research Turned Upside Down," Nature 353 (26 September 1991): 297.

8. Roger Highfield, "Pilloried Professor May Be Right about Aids," Daily Telegraph, 26 September 1991, 6. (In Britain, the syndrome has generally been spelled with a combination of upper- and lowercase letters, as "Aids.")

9. Randy Peters, "New Study Vindicates Duesberg, Calls AIDS an Auto-immune Disease," Bay Area Reporter, 14 November 1991, 24.

10. Joseph Palca, "Duesberg Vindicated? Not Yet," Science 254 (18 October 1991): 376.

11. Ibid.

12. Joseph Sonnabend, "AIDS Research: All Sound and No Fury," NYQ, 1 December 1991, 50-51.

13. Anonymous reviews accompanying letter from Igor B. Dawid to Peter Duesberg, 12 February 1991.

14. Peter Duesberg, interview by author, tape recording, Berkeley, Calif., 28 September 1992.

15. My account here is based on a follow-up interview with Bryan Ellison, 23 October 1992.

16. P. H. Duesberg, "The Role of Drugs in the Origin of AIDS," Biomedicine & Pharmacotherapy 46 (January 1992): 3-15, quotes from 5, 8, 10.

17. Ibid., 5-6.

18. Margaret A. Fischl et al., "The Efficacy of Azidothymidine (AZT) in the Treatment of Patients with AIDS and AIDS-Related Complex," New England Journal of Medicine 317 (23 July 1987): 185-191. For debates, see Ezra Bowen, "Fateful Decisions on Treating AIDS," Time, 2 February 1987, 62; and John Lauritsen, Poison by Prescription: The AZT Story (New York: Asklepios, 1990), 19.

19. See the extended discussion of AZT studies in part two of this book.

20. In 1989, an open letter in the New York Native describing the use of AZT as "genocide" was signed by a range of community representatives, including Ortleb and Neenyah Ostrom from the Native staff; Lauritsen; James D'Eramo; and ACT UP member Michael Petrelis ("An Open Letter to Mayor Koch," New York Native, 21 August 1989, 23).

21. See, for example, Michael Callen, "A Dinosaur's Diary," NYQ, 12 April 1992, 49-78.

22. Duesberg, "The Role of Drugs," 7, 9, 11.

23. Alfred S. Evans, "Author's Reply," Journal of Acquired Immune Deficiency Syndromes 2 (October 1989): 515-517 (letter to the editor).

24. Neville Hodgkinson, "Experts Mount Startling Challenge to Aids Orthodoxy," Sunday Times (London), 26 April 1992, 1; Neville Hodgkinson, "Aids: Can We Be Positive?" Sunday Times (London), 26 April 1992, 12-13; Neville Hodgkinson, "Time to Think Again on Aids Link, Claims HIV Pioneer," Sunday Times (London), 26 April 1992, 13.

25. Hodgkinson, "Aids: Can We Be Positive?" 12. In conversation, Duesberg identified himself to me as the observer quoted.

26. Clive Cooksun and Jenny Lynch, "A Chain Reaction—A Simple Method of Analysing Genetic Material Could Be Worth Billions of Dollars," Financial Times, 2 October 1992, 19.

27. Hodgkinson, "Aids: Can We Be Positive?" 12.

28. Nigel Hawkes, "Scientists Challenge Aids Link to HIV," Times (London), 27 April 1992.

29. "Wellcome Defends AZT Against Aids Report," Reuters, 27 April 1992.

30. Steve Connor, "Government Fears Complacency over Aids Prevention," The Independent, 2 May 1992.

31. William Leith, "New Theories, Old Prejudices," The Independent, 10 May 1992, 22 (op-ed).

32. Steve Connor, "The Spreading of a Terrible Myth," The Independent, 14 May 1992, 25 (op-ed).

33. Malcolm Dean, "London Perspective: AIDS and the Murdoch Press," Lancet 339 (23 May 1992): 1286 (News & Comment section).

34. Pierre Bourdieu, "The Specificity of the Scientific Field and the Social Conditions of the Progress of Reason," Social Science Information 14 (December 1975): 19-47, esp. 30.

35. Duesberg, interview.

36. Peter Gorner, "A Lively Cocktail Party of Scientists," Chicago Tribune, 15 November 1989, C-3.

37. "Last of the Great Tinkerers," Time, 12 August 1991, 55.

38. Tony Perry, "San Diego at Large: When You're a Flaky Genius, Problems Can Cease to Exist," Los Angeles Times, 1 September 1991, B-1, San Diego County edition.

39. Kary B. Mullis, "The Unusual Origins of the Polymerase Chain Reaction," Scientific American 262 (April 1990): 56.

40. Perry, "San Diego at Large."

41. Scott LaFee, "San Diegan Wins Chemistry Nobel," San Diego Union-Tribune, 14 October 1993, A-1.

42. Peter H. Duesberg, "Can Alternative Hypotheses Survive in This Era of Megaprojects?" The Scientist, 8 July 1991, 12 (commentary).

43. Ian Geogheagn, "U.K. Health Body Attacks Alternative Aids Claims," Reuters, 15 May 1992.

44. Nigel Hawkes, "Scientists Reject Role of HIV in Aids Cases," Times (London), 15 May 1992.

45. Tom Fennell, "What Causes AIDS," Macleans, 1 June 1992, 32.

46. "The New AIDS Controversy: Research World Torn by Theory That Says HIV May Not Trigger Deadly Disease," Toronto Star, 7 June 1992, B-1.

47. National Public Radio (segment reported by Mike Hornwick, Canadian Broadcasting Corporation), NPR Weekend Edition, 16 May 1992.

48. Avril McDonald, "HIV Does Not Cause AIDS, Virus Discoverer Claims," QW, 10 May 1992, 63.

49. Neenyah Ostrom, "Montagnier: HIV Is Not the Cause," New York Native, 11 May 1992, 7.

50. Arturo Jackson III, "Is the HIV Virus Really the True Cause of AIDS?" San Francisco Sentinel, 7 May 1992, 1.

51. On Delaney's relationship with Gallo and perceptions of him, see Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992), 337, 343-344, 413, 460-461.

52. Reporter Lisa Krieger printed excerpts from the letter in her "AIDS-WEEK" column in the San Francisco Examiner, 20 May 1992, A-2.

53. Luc Montagnier, letter to Martin Delaney, Paris, 12 May 1992.

54. "Discussion Paper #5" (Project Inform, San Francisco, 3 June 1992, photocopy), 1 (boldface in the original).

55. Ibid., 5.

56. Ibid.

57. Ibid., 2.

58. Ibid.

59. Ibid., 5-6.

60. Ibid., 3.

61. Duesberg, interview.

62. Bruce Livesey and Ellen Lipsius, "AIDS: Modern Medicine's Achilles' Heel," Canadian Dimension, October 1989, 27-30, quote from 28.

63. Thomas, interview.

64. The quotes are from an article describing the magazine: Paul Ciotti, "John Kurzweil of Sherman Oaks Publishes a Conservative Political Magazine," Los Angeles Times, 14 August 1992, 20.

65. Tom Bethell, "The Case for Buchanan," National Review, 2 March 1992: 34-37 (cover story).

66. Tom Bethell, "Column Right: We May Regret Going Along with This: The Gay-Rights Agenda Precludes Any Public Doubts," Los Angeles Times, 8 July 1991, B-5 (op-ed).

67. Tom Bethell, "Conversations in the Tenderloin," California Political Review, fall 1991: 20-23.

68. "Discussion Paper #5," 4.

69. Ellison, interview.

70. Thomas Ryan, "AIDS as Career," Christopher Street, May 1988, 28-35, quote from 31.

71. Drew Hopkins, "Peter Duesberg and the Media," Christopher Street, April 1988, 52-59.

72. Geoffrey Cowley, "Is a New AIDS Virus Emerging?" Newsweek, 27 July 1992, 41.

73. Lawrence K. Altman, "New Virus Said to Cause a Condition Like AIDS," New York Times, 23 July 1992, B-8.

74. Cowley, "Is a New AIDS Virus Emerging?" 41.

75. See Martin Delaney's report: "Does a New Virus Stalk the Land?" Advocate, 25 August 1992, 33.

76. Peter Duesberg, "HIV-Free AIDS Reports," Science 257 (21 September 1992): 1848 (letter to the editor).

77. Steve Heimoff, "Test Ideas with Science, Not Scorn: Critics Who Insist That HIV Doesn't Cause AIDS May Be Wrong, but Their Argument Deserves Checking," Los Angeles Times, 28 July 1992, B-7 (op-ed).

78. Michael Fumento, "A Complicated Disease Won't Have Simple Answers: The AIDS Establishment Needs Critics, but Arguing That HIV Doesn't Cause the Disease Is Murderously Wrong," Los Angeles Times, 28 July 1992, B-7 (op-ed).

79. Peter H. Duesberg and Bryan J. Ellison, letter to the editor, Los Angeles Times, 7 August 1992, B-6.

80. Bruce Mirken, "The Twilight Zone," QW, 9 August 1992, 44, 67, 68; John S. James, "AIDS Treatment News,' San Francisco Bay Times, 13 August 1992, 12-14.

81. Delaney, "Does a New Virus Stalk the Land?" 33.

82. Charles E. Ortleb, "Honey, I Blew Up the HIV Paradigm," New York Native, 3 August 1992, 4 (editorial).

83. Geoffrey Cowley, "AIDS or Chronic Fatigue?" Newsweek, 7 September 1992, 66.

84. Christine Gorman, "Invincible AIDS," Time, 3 August 1992, 28-37. The magazine's cover read: "Losing the Battle."

85. Daniel J. DeNoon, "Jury Still Out on Etiology of HIV-Negative CD4 Deficiency," CDC AIDS Weekly, 24 August 1992, 2-6 (news report).

86. "Unexplained CD4 + T-Lymphocyte Depletion in Persons without Evident HIV Infection—United States," Morbidity and Mortality Weekly Report 41 (31 July 1992): 541-545; "Update: CD4 + T-Lymphocytopenia in Persons without Evident HIV Infection—United States," Morbidity and Mortality Weekly Report 41 (7 August 1992): 578-579.

87. DeNoon, "Jury Still Out," 3.

88. World Health Organization Global Programme on AIDS, Report of a Scientific Meeting on Unexplained Severe Immunodeficiency without Evidence of HIV Infection (Geneva, 28-29 September 1992).

89. One report was: Omar Bagasra et al., "Detection of Human Immunodeficiency Virus Type-1 Provirus in Mononuclear Cells by In Situ Polymerase Chain Reaction," New England Journal of Medicine 326 (21 May 1992): 1385-1391. The other report was made by Dr. David Ho at a Burroughs Wellcome symposium in Amsterdam (described in: Ronald A. Baker, "Treatment Updates from the Harvard-Amsterdam AIDS Conference," BETA, August 1992, 1-11).

90. Janet Embretson et al., "Analysis of Human Immunodeficiency Virus-Infected Tissues by Amplification and In Situ Hybridization Reveals Latent and Permissive Infections at Single-Cell Resolution," Proceedings of the National Academy of Sciences 90 (January 1993): 357.

91. David Perlman, "HIV Is Never Truly Latent, Lymphoid Cell Studies Show," San Francisco Chronicle, 25 March 1993, A-2.

92. John Maddox, "Facing the Cruel Truth about HIV," Times (London), 25 March 1993 (features section).

93. Lawrence K. Altman, "Cost of Treating AIDS Patients Is Soaring," New York Times, 23 July 1992, B-8.

94. Kevin J. P. Craib et al., "HIV Causes AIDS: A Controlled Study" (Abstract #WeC 1027), VIII International Conference on AIDS, Amsterdam, 22 July 1992.

95. This exchange occurred in a UC Berkeley classroom debate: "IDS Seminar Series" (forum on causes of AIDS, with Peter Duesberg, Warren Winkelstein, and Chip Shepard), University of California at Berkeley, 28 September 1992 (author's field notes).

96. M. S. Ascher et al., "Does Drug Use Cause AIDS?" Nature 362 (11 March 1993): 103-104.

97. Sheryl Stolberg, "Studies Rebut Controversial AIDS Theory," Los Angeles Times, 11 March 1993, A-18; Gina Kolata, "Debunking Doubts That H.I.V. Causes AIDS," New York Times, 11 March 1993, B-13.

98. Ascher et al., "Does Drug Use Cause AIDS?" 103.

99. H. Tristram Engelhardt Jr. and Arthur L. Caplan, "Patterns of Controversy and Closure: The Interplay of Knowledge, Values, and Political Forces," in Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science and Technology, ed. H. Tristram Engelhardt Jr. and Arthur L. Caplan (Cambridge, England: Cambridge Univ. Press, 1987), 6, 11.

100. Fujimura and Chou have contended that Duesberg relied on a "laboratory style of practice" and his adversaries employed an "epidemiological style of practice." While that may be correct, over time both sides came to emphasize epidemiology as the science that could conceivably provide the most definitive evidence. See Joan H. Fujimura and Danny Y. Chou, "Dissent in Science: Styles of Scientific Practice and the Controversy over the Cause of AIDS," Social Science and Medicine 38 (April 1994): 1017-1036.

101. Bryan Ellison, interview by author, Berkeley, 23 October 1992. See also the critique of the Craib et al. study in Benjamin A. Goldman and Michael Chappelle, "Is HIV = AIDS Wrong?" In These Times, 5 August 1992, 8-10.

102. Harry Collins and Trevor Pinch, The Golem: What Everyone Should Know about Science (Cambridge: Cambridge Univ. Press, 1993), 3.

103. Steven Shapin, "Cordelia's Love: Credibility and the Social Studies of Studies," Perspectives on Science 3, no. 3 (1995): 255-275.

104. Martin Delaney, "Evidence Does Not Back Duesberg's Views," San Francisco Chronicle, 4 September 1992, A-29 (op-ed).

105. See Fujimura and Chou, "Dissent in Science."

106. René Dubos, Mirage of Health: Utopias, Progress, and Biological Change (New York: Harper & Brothers, 1959), 86.

107. "What Causes AIDS? A Second Look" (reported by Colman Jones, Canadian Broadcasting Corporation, Toronto), Ideas, 6-7 November 1991. Transcript published in 1992.

108. Robert Gallo, interview by author, tape recording, Bethesda, Md., 3 November 1994.

109. Robert S. Root-Bernstein, Rethinking AIDS: The Tragic Cost of Premature Consensus (New York: Free Press, 1993). For a more recent update, see Robert S. Root-Bernstein, "Five Myths about AIDS That Have Misdirected Research and Treatment," Genetica 95, no. 1-3 (1995): 111-132.

110. John Lauritsen, The AIDS War: Propaganda, Profiteering and Genocide from the Medical-Industrial Complex (New York: Asklepios, 1993).

111. Peter H. Duesberg, Inventing the AIDS Virus (Washington, D.C.: Regnery, 1996).

112. David W. Dunlap, "Michael Callen, Singer and Expert on Coping with AIDS, Dies at 38," New York Times, 29 December 1993.

113. Colin Macilwain, "AAAS Criticized over AIDS Sceptics' Meeting," Nature 369 (May 1994): 265; Rick Weiss, "And Now for Something Completely Different: Florida Physician Throws a Dramatic Jab at the Experts' View of AIDS," Washington Post, 1 November 1994, 7; Richard Stone, "Congressman Uncovers the HIV Conspiracy," Science 268 (14 April 1995): 191.

114. Jon Cohen, "The Duesberg Phenomenon," Science 266 (9 December 1994): 1642-1649 (special news report). The article prompted eight pages of letters, published in the January 13 and January 20 issues. This article marked my own entry as an actor in the controversy: I was interviewed by Cohen about the sociological bases of the controversy and quoted in the text. For a critique of Cohen's article that also takes me to task, see Tom Bethell, "The Cohen Phenomenon," Reappraising AIDS 3 (April 1995).

115. Cohen, "Duesberg Phenomenon," 1645, 1647, 1649.

116. Billy Goodman, "A Controversy That Will Not Die: The Role of HIV in Causing AIDS," The Scientist, 20 March 1995, 1, 6, 7. Goodman had read my doctoral dissertation; the title of his article was borrowed from the title of this chapter in its earlier incarnation.

117. Anthony Fauci, "Writing for My Sister Denise," AAAS Observer, 1 September 1989, 4.

118. Harry M. Collins and Trevor J. Pinch, "The Construction of the Paranormal: Nothing Unscientific Is Happening," in On the Margins of Science: The Social Construction of Rejected Knowledge, ed. Roy Wallis (Keele, England: Univ. of Keele Press, 1979), 237-270.

119. Susan Leigh Star, Regions of the Mind: Brain Research and the Quest for Scientific Certainty (Stanford: Stanford Univ. Press, 1989), 140.

120. See Brian Martin, Scientific Knowledge in Controversy: The Social Dynamics of the Flouridation Debate (Albany: State Univ. of New York Press, 1991), esp. chapter 4 ("The Struggle over Credibility"). For similar credibility strategies, see Star, Regions of the Mind, 138-144.

121. Martin, Scientific Knowledge in Controversy, 61, 62.

122. Ibid., 89.

123. Fumento, quoted in Tom Bethell, "Heretic," American Spectator, May 1992, 18.

124. Martin, Scientific Knowledge in Controversy, 90.

125. Michael C. Botkin, "The Great KS Debate," Bay Area Reporter, 29 August 1991, 19.

126. These anecdotes were reported in Martin, Scientific Knowledge in Controversy, 93-98.

127. Ibid., 101.

128. Ibid.

129. Celia Farber, "Fatal Distraction," Spin, June 1992, 84.

130. Delaney, "Evidence Does Not Back Duesberg's Views," A-29.

131. Anthony Fauci, "Writing for My Sister Denise."

132. On scientists' difficulties in signaling degrees of consensus to the lay public, see Yaron Ezrahi, "The Authority of Science in Politics," in Science and Values: Patterns of Tradition and Change, ed. Arnold Thackray and Everett Mendelsohn (New York: Humanities Press, 1974), 215-251, esp. 222. On the media's tendency to portray scientific controversies as having "two sides, of somewhat comparable merit," see Rae Goodell, "The Role of the Mass Media in Scientific Controversies," in Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science and Technology, ed. H. Tristram Engelhardt Jr. and Arthur L. Caplan (Cambridge, England: Cambridge Univ. Press, 1987), 585-597, quote from 589.

133. Duesberg, interview.

134. Ibid.

135. Anne Karpf, Doctoring the Media: The Reporting of Health and Medicine (London: Routledge, 1988), 111.

136. Goodell, "Role of the Mass Media in Scientific Controversies," 590.

137. Karpf, Doctoring the Media, 111, describing David M. Rubin and Val Hendy, "Swine Influenza and the News Media," Annals of Internal Medicine 87 (December 1977): 769-774.

138. Duesberg, interview.

139. For Gallo's critiques of the press, see Robert Gallo, Virus Hunting (New York: Basic Books, 1991).

140. Russell Schoch, "A Conversation with Peter Duesberg," California Monthly, April 1990, 8-11, quote from 9.

141. "An AIDS Theory That Can Kill," San Francisco Examiner, 11 September 1992, A-26 (editorial).

142. Celia Farber, "AIDS: Words from the Front," Spin, August 1992, 65-67.

143. Duesberg, interview.

Chapter 5 Points of Departure

1. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin's, 1987), 451.

2. Philip M. Boffey, "A Likely AIDS Cause, but Still No Cure," New York Times, 29 April 1984, sec. 4, p. 22.

3. Margaret I. Johnston and Daniel F. Hoth, "Present Status and Future Prospects for HIV Therapies," Science 260 (28 May 1993): 1286-1293.

4. See John M. Coffin, "Introduction to Retroviruses," in AIDS and OtherManifestations of HIV Infection, 2d ed., ed. Gary P. Wormser (New York: Raven Press, 1992), 37-56.

5. For an example of an argument linking this conception of pathogenesis with the search for a reverse transcriptase inhibitor, see Dani P. Bolognesi and Peter J. Fischinger, "Prospects for Treatment of Human Retrovirus-Associated Diseases," Cancer Research 45, Suppl. (September 1985): 4700s-4705s.

6. H. Mitsuya et al., "Suramin Protection of T Cells in Vitro Against Infectivity and Cytopathic Effect of HTLV-III," Science 226 (12 October 1984): 172-174.

7. W. Rozenbaum et al., "Antimoniotungstate (HPA 23) Treatment of Three Patients with AIDS and One with Prodrome," Lancet, 23 February 1985, 450-451.

8. Ibid., 450.

9. Matt Clark and Vincent Coppola, "AIDS: A Growing 'Pandemic'?" Newsweek, 29 April 1985, 71.

10. Lawrence K. Altman, "The Doctor's World: AIDS Data Pour In, Studies Proliferate," New York Times, 23 April 1985, C-3.

11. The following history of drug regulation in the United States draws from Harry Milton Marks, "Ideas as Reforms: Therapeutic Experiments and Medical Practice, 1900-1980" (Ph.D. diss., Massachusetts Institute of Technology, 1987); and Albert R. Jonsen and Jeff Stryker, eds., The Social Impact of AIDS in the United States (Washington, D.C.: National Academy Press, 1993), 84-87.

12. Marks has refuted the commonly told story that, before Kefauver-Harris, the FDA never looked at efficacy; see "Ideas as Reforms," 53. Ironically, thalidomide has recently resurfaced, as a potential AIDS drug.

13. Marks, "Ideas as Reforms," 85-86.

14. Harold M. Schmeck Jr., "Scientists Say Genes in AIDS May Hamper Vaccine Work," New York Times, 11 October 1984, A-24.

15. Altman, "Doctor's World: AIDS Data Pour In."

16. "International Conference," BAPHRON 7 (May-June 1985): 306.

17. William F. Buckley Jr., "Steps in Combating the AIDS Epidemic," New York Times, 18 March 1985 (op-ed).

18. Cindy Patton has criticized the common tendency to imagine that AIDS activism originated with the birth of ACT UP in 1987; see Inventing AIDS (New York: Routledge, 1990), 19.

19. Michael Specter, "The New Politics of AIDS," Washington Post Weekly, 19 August 1985, 9.

20. See Jackie Winnow, "Lesbians Evolving Health Care: Cancer and AIDS," Feminist Review, summer 1992, 68-77; Gena Corea, The Invisible Epidemic: The Story of Women and AIDS (New York: HarperCollins, 1992); Amber Hollibaugh, "Lesbian Denial and Lesbian Leadership in the AIDS Epidemic: Bravery and Fear in the Construction of a Lesbian Geography of Risk," in Women Resisting AIDS: Feminist Strategies of Empowerment, ed. Beth E. Schneider and Nancy E. Stoller (Philadelphia: Temple Univ. Press, 1995), 219-230; Nancy Stoller, "Lesbian Involvement in the AIDS Epidemic: Changing Roles and Generational Differences," in Women Resisting AIDS (above), 270-285.

21. Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992), 20-73.

22. Mark Clark et al., "AIDS Exiles in Paris," Newsweek, 5 August 1985, 71.

23. Irvin Molotsky, "French AIDS Drug Due for U.S. Tests," New York Times, 31 July 1985, A-10.

24. Lawrence K. Altman, "The Doctor's World: Search for an AIDS Drug Is Case History in Frustration," New York Times, 30 July 1985, C-1.

25. Kwitny, Acceptable Risks, 49-50, 82-83.

26. Ibid., 29-31.

27. See, for example, Robert J. Levine, Ethics and Regulation of Clinical Research (Baltimore: Urban & Schwarzenberg, 1986).

28. Jonsen and Stryker, Social Impact of AIDS, 81.

29. David J. Rothman, Strangers at the Bedside (New York: Basic Books, 1991), 15-18, 70-84.

30. James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York: Free Press, 1981).

31. Jonsen and Stryker, Social Impact of AIDS, 87-88.

32. David J. Rothman and Harold Edgar, "AIDS, Activism, and Ethics," Hospital Practice 26 (15 July 1991): 135-142, quote from 136.

33. Robert Yarchoan et al., "Implications of the Discovery of HTLV-III for the Treatment of AIDS," Cancer Research 45, Suppl. (September 1985): 4685s-4688s.

34. Samuel Broder et al., "Effects of Suramin on HTLV-III/LAV Infection Presenting as Kaposi's Sarcoma or AIDS-Related Complex: Clinical Pharmacology and Suppression of Virus Replication in Vivo," Lancet, 21 September 1985, 627-630.

35. Bruce Nussbaum, Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight against AIDS (New York: Atlantic Monthly Press, 1990), 23.

36. See Kwitny, Acceptable Risks, 84-93 and the accompanying endnotes.

37. Paul Volberding and Donald Abrams, quoted in Kwitny, Acceptable Risks, 437.

38. Barry Adkins, "Looking at AIDS in Totality: A Conversation with Joseph Sonnabend," New York Native, 7 October 1985, 21-25.

39. See the account in Nussbaum, Good Intentions, chapter 1.

40. "A Failure Led to Drug against AIDS," New York Times, 20 September 1986, A-7.

41. "New Drug Shows Gain in Fight against AIDS," New York Times, 26 January 1986, A-17.

42. Robert Yarchoan et al., "Administration of 3&0374;-Azido-3&0374;-Deoxythymidine, an Inhibitor of HTLV-III/LAV Replication, to Patients with AIDS or AIDS-Related Complex," Lancet, 15 March 1986, 575-580.

43. Jean L. Marx, "AIDS Drug Shows Promise in Preliminary Clinical Trial," Science 231 (28 March 1986): 1504-1505.

44. Yarchoan et al., "Administration of 3&0374;-Azido-3&0374;-Deoxythymidine," 580.

45. John S. James, "What's Wrong with AIDS Treatment Research?" AIDS Treatment News, 9 May 1986.

46. John James, interview by author, tape recording, San Francisco, 10 December 1993; Peter S. Arno and Karyn L. Feiden, Against the Odds: The Story of AIDS Drug Development, Politics and Profits (New York: HarperCollins, 1992), 64; Katherine Bishop, "Underground Press Leads Way on AIDS Advice," New York Times, 16 December 1991, A-16.

47. This figure is given by John James in "A Wish List, Some Problems, and Recommendations: Testimony of John S. James before the Presidential Commission on the HIV Epidemic, New York City, New York, February 20, 1988," AIDS Treatment News, 26 February 1988.

48. Debbie Indyk and David Rier, "Grassroots AIDS Knowledge: Implications for the Boundaries of Science and Collective Action," Knowledge: Creation, Diffusion, Utilization 15 (September 1993): 3-43, quote from 9.

49. James, "What's Wrong with AIDS Treatment Research?"

50. John S. James, "AIDS Conspiracy—Just a Theory?" AIDS Treatment News (September 1986).

51. Erik Eckholm, "$100 Million for AIDS Drug Testing," New York Times, 1 July 1986, C-3.

52. Nussbaum, Good Intentions, 127-130.

53. See Marks, "Ideas as Reforms"; Theodore M. Porter, Trust in Numbers: The Pursuit of Objectivity in Science and Public Life (Princeton, N.J.: Princeton Univ. Press, 1995), 203-216; and the citations I provide in note 147 of the introduction.

54. Marks, "Ideas as Reforms," 173, 239, 242.

55. This estimate was offered by Dr. Curtis Meinert, editor of the specialty journal Controlled Clinical Trials, in Philip M. Boffey, "Thousands in U.S. Receive Treatments in Experiments," New York Times, 7 January 1986, C-1.

56. Boffey, "Thousands in U.S. Receive Treatments."

57. Ibid.

58. See Susan Ellenberg et al., "The Use of External Monitoring Committees in Clinical Trials of the National Institute of Allergy and Infectious Diseases," Statistics in Medicine 12 (March 1993): 461-467.

59. Erik Eckholm, "AIDS Drug Prolongs Lives in Some Cases," New York Times, 20 September 1986, A-1.

60. Deborah M. Barnes, "Promising Results Halt Trial of Anti-AIDS Drug," Science 234 (3 October 1986): 15-16.

61. Margaret A. Fischl et al., "The Efficacy of Azidothymidine (AZT) in the Treatment of Patients with AIDS and AIDS-Related Complex," New England Journal of Medicine 317 (23 July 1987): 185-191.

62. Douglas D. Richman et al., "The Toxicity of Azidothymidine (AZT) in the Treatment of Patients with AIDS and AIDS-Related Complex," New England Journal of Medicine 317 (23 July 1987): 192-197.

63. Erik Eckholm, "Test Group for AIDS Drug Is Broadened to Include 7,000," New York Times, 1 October 1986, B-6.

64. Irvin Molotsky, "U.S. Approves Drug to Prolong Lives of AIDS Patients," New York Times, 21 March 1987, A-1.

65. Barnaby J. Feder, "Drug Expected to Spur Growth and Profit of Its Maker," New York Times, 21 March 1987, A-32.

66. Gina Kolata, "Imminent Marketing of AZT Raises Problems," Science 235 (20 March 1987): 1462-1463 ("Research News").

67. Ezra Bowen, "Fateful Decisions on Treating AIDS," Time, 2 February 1987, 62.

68. Itzak Brook, "Approval of Zidovudine (AZT) for Acquired Immunodeficiency Syndrome," Journal of the American Medical Association 258 (18 September 1987): 1517 (commentary).

69. Bowen, "Fateful Decisions on Treating AIDS."

70. Philip J. Hilts, "Results of AIDS Drug Test Raising Ethical Questions," Washington Post, 14 September 1986, A-1.

71. Bowen, "Fateful Decisions on Treating AIDS."

72. Benjamin Freedman, "Equipoise and the Ethics of Clinical Research," New England Journal of Medicine 317 (16 July 1987): 141-145.

73. Jonsen and Stryker, Social Impact of AIDS, 83-84.

74. See François Blanchard and Ruth Murbach, "AIDS and Clinical Research: Ethical Controversy and Equipoise" (paper presented at the annual meeting of the Society for Social Studies of Science, Minneapolis, 19 October, 1990).

75. Robert M. Veatch, The Patient as Partner: A Theory of Human-Experimentation Ethics (Bloomington: Indiana Univ. Press, 1987), 7, 211.

76. Dominique Lapierre, Beyond Love (New York: Warner Books, 1991), 369.

77. From a conference presentation published as: Douglas D. Richman, "Public Access to Experimental Drug Therapy: AIDS Raises Yet Another Conflict between Freedom of the Individual and Welfare of the Individual and Public," Journal of Infectious Diseases 159 (March 1989): 412-415.

78. Ibid.

79. See Ruth Macklin and Gerald Friedland, "AIDS Research: The Ethics of Clinical Trials," Law, Medicine & Health Care 14 (December 1986): 273-280; David J. Rothman and Harold Edgar, "Scientific Rigor and Medical Realities: Placebo Trials in Cancer and AIDS Research," in AIDS: The Making of a Chronic Disease, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1992), 194-206.

80. These anecdotes are reported in Lapierre, Beyond Love, 366-367.

81. See Gary B. Melton et al., "Community Consultation in Socially Sensitive Research: Lessons from Clinical Trials of Treatments for AIDS," American Psychologist 43 (July 1988): 573-581, esp. 574.

82. Harry Collins has emphasized that perceptions of certainty in science typically depend on one's "distance from the research front": the closer one gets to the center, the messier things appear (H. M. Collins, "Certainty and the Public Understanding of Science: Science on Television," Social Studies of Science 17 [1987]: 692).

83. Ivan Emke, "Medical Authority and Its Discontents: The Case of Organized Non-Compliance," Critical Sociology 19 (Fall 1993): 57-80.

84. Norman Fineman, "The Social Construction of Noncompliance: A Study of Health Care and Social Service Providers in Everyday Practice," Sociology of Health & Illness 13 (September 1991): 354-374.

85. Emke, "Questioning Medical Authority."

86. Eliot Freidson, "The Impurity of Professional Authority," in Institutions and the Person, ed. Howard S. Becker, Blanche Geer, et al. (Chicago: Aldine, 1968), 25-34, esp. 29-30.

87. On models of the doctor-patient relationship, see Thomas S. Szasz and Marc H. Hollender, "A Contribution to the Philosophy of Medicine: The Basic Models of the Doctor-Patient Relationship," Archives of Internal Medicine 97 (May 1956): 585-592. On the transformation of the patient into a surgical "object," see Stefan Hirschauer, "The Manufacture of Bodies in Surgery," Social Studies of Science 21 (May 1991): 279-319.

88. Indyk and Rier, "Grassroots AIDS Knowledge," 6.

89. PWA Coalition, "Founding Statement of People with AIDS/ARC," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 148-149.

90. PWA Coalition, "A Patient's Bill of Rights," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 160.

91. Tim Kingston, "The AIDS Industry vs. the Healing Workers," Coming Up! April 1988, 10-13. The anthropologist cited was Ronald Frankenberg of the University of Keele in England.

92. Michelle Roland, "Managing Your Doctor," AIDS Treatment News, 21 September 1990, 4.

93. John D. Arras, "Noncompliance in AIDS Research," Hastings Center Report, September-October 1990, 24-32.

94. Barrie R. Cassileth and Helene Brown, "Unorthodox Cancer Medicine," Ca—A Cancer Journal for Clinicians 38 (May-June 1988): 176-186.

95. Paul Monette, Borrowed Time: An AIDS Memoir (San Diego: Harcourt Brace Jovanovich, 1987), 92.

96. Lapierre, Beyond Love, 214.

97. Charles L. Bosk and Joel E. Frader, "AIDS and Its Impact on Medical Work: The Culture and Politics of the Shop Floor," Milbank Quarterly 68, suppl. 2 (1990): 257-279, esp. 271.

Chapter 6 "Drugs Into Bodies"

1. Robert C. Gallo et al., "HTLV-III/LAV and the Origin and Pathogenesis of AIDS," International Archives of Allergy and Applied Immunology 82 (March-April 1987): 471-475.

2. Gina Kolata, "The Evolving Biology of AIDS: Scavenger Cell Looms Large," New York Times, 7 June 1988, C-1.

3. See Wendy K. Mariner and Robert C. Gallo, "Getting to Market: The Scientific and Legal Climate for Developing an AIDS Vaccine," Law, Medicine& Health Care 15 (summer 1987): 17-26; Jay A. Levy, "Can an AIDS Vaccine Be Developed?" Transfusion Medicine Reviews 2 (December 1988): 264-271.

4. Lawrence K. Altman, "The Doctor's World: Who Will Volunteer for an AIDS Vaccine?" New York Times, 15 April 1986, C-1. The official was not identified.

5. Ibid. From a statistical standpoint, the only solution is to do a larger trial or have it run for a longer period of time, so as to generate more "events" of HIV infection—or simply to assume that AIDS education is never going to be entirely effective in preventing new infections.

6. Philip M. Boffey, "Experts Find Lag on Testing Drugs in AIDS Patients," New York Times, 12 April 1987, A-1.

7. Ibid.

8. Bruce Nussbaum, Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight against AIDS (New York: Atlantic Monthly Press, 1990), 143 ff.

9. Daniel Hoth, interview by author, tape recording, Foster City, Calif., 11 July and 19 October, 1994.

10. Ibid.

11. Philip M. Boffey, "Campaign to Find Drugs for Fighting AIDS Is Intensified," New York Times, 14 February 1988, A-1.

12. Ibid.

13. Dick Thompson, "A Decoy for the Deadly AIDS Virus: Human Tests Begin for a New Genetically Engineered Drug," Time, 22 August 1988, 69.

14. Ellen Cooper, interview by author, tape recording, Rockville, Md., 25 April 1994.

15. Gina Kolata, "Doctors Stretch Rules on AIDS Drug," New York Times, 21 December 1987, A-1.

16. Mathilde Krim, "Making Experimental Drugs Available for AIDS Treatment," AIDS & Public Policy 2 (spring-summer 1987): 1-5.

17. Tim Kingston, "Death by Placebo: The Sacrificial Lambs of Protocol 019," Coming Up! September 1988, 10-11.

18. Thomas C. Chalmers, "The Need for Early Randomization in the Development of New Drugs for AIDS," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S11.

19. Kingston, "Death by Placebo," 10.

20. Robert J. Levine, "Clinical Trials and Physicians as Double Agents," Yale Journal of Biology and Medicine 65 (March-April 1992): 65-74.

21. David J. Rothman and Harold Edgar, "Scientific Rigor and Medical Realities: Placebo Trials in Cancer and AIDS Research," in AIDS: The Making of a Chronic Disease, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1992), 194-206, quote from 205.

22. Andrew Abbott, The System of Professions: An Essay on the Division of Expert Labor (Chicago: Univ. of Chicago Press, 1988), 188 ff; Andrew Abbott, "Status and Status Strain in the Professions," American Journal of Sociology 86 (January 1981): 819-835.

23. See Mary-Rose Mueller, "Science in the Community: The Redistribution of Medical Authority in Federally Sponsored Treatment Research for AIDS" (Ph.D. diss., University of California at San Diego, 1995).

24. John S. James, "Treatment Research Ideas for Community-Based Trials," AIDS Treatment News, 7 October 1988.

25. Mueller, "Science in the Community," quote from 276n.

26. Bruno Latour, "Give Me a Laboratory and I Will Raise the World," in Science Observed: Perspectives on the Social Study of Science, ed. Karin D. Knorr-Cetina and Michael Mulkay (London: Sage, 1983), 141-170.

27. John S. James, "Community Research Alliance: New San Francisco Effort for Community-Based Trials," AIDS Treatment News, 2 December 1988.

28. Albert R. Jonsen and Jeff Stryker, eds., The Social Impact of AIDS in the United States (Washington, D.C.: National Academy Press, 1993), 100.

29. Donald Abrams, interview by author, tape recording, San Francisco, 16 December 1993.

30. James, "Community Research Alliance."

31. "Decisions for Community-Based Trials," AIDS Treatment News, 7 October 1988; Gina Kolata, "Doctors and Patients Take AIDS Drug Trials into Their Own Hands," New York Times, 15 March 1988, C-3.

32. Peter S. Arno and Karyn L. Feiden in Against the Odds: The Story of AIDS Drug Development, Politics, and Profits (New York: HarperCollins, 1992) III.

33. Ibid., 93-95, 116.

34. Ibid., 118; Nussbaum, Good Intentions, 233.

35. Nussbaum, Good Intentions, 234.

36. Presidential Commission on the Human Immunodeficiency Virus Epidemic, Report of the Presidential Commission on the Human Immunodeficiency Virus Epidemic, Submitted to the President of the United States, June 24, 1988 (Washington, D.C., 1988), 56.

37. Dr. Burton J. Lee Jr., quoted in Kolata, "Doctors and Patients Take AIDS Drug Trials into Their Own Hands."

38. Gina Kolata, "Private Doctors Testing AIDS Drugs in Novel Approach," New York Times, 9 July 1989, A-1.

39. Charles Linebarger, "CMJ Zaps Drug Maker for AIDS Profiteering," Bay Area Reporter, 4 June 1987, 14.

40. "AIDS Action Pledge Holds First Meeting," Bay Area Reporter, 27 August 1987, 14.

41. On ACT UP, see "ACT UP/New York Capsule History" (AIDS Coalition to Unleash Power, New York, 1991, photocopy); ACT UP/New York Women and AIDS Book Group, Women, AIDS, and Activism (Boston: South End Press, 1990); Cathy Jean Cohen, "Power, Resistance and the Construction of Crisis: Marginalized Communities Respond to AIDS" (Ph.D. diss., University of Michigan, 1993); Douglas Crimp and Adam Rolston, AIDS Demographics (Seattle: Bay Press, 1990); Gilbert Elbaz, "The Sociology of AIDS Activism, the Case of ACT UP/New York, 1987-1992" (Ph.D. diss., City University of New York, 1992); Josh Gamson, "Silence, Death, and the Invisible Enemy: AIDS Activism and Social Movement `Newness,'" Social Problems 36 (October 1989): 351-365; Maxine Wolfe, "The AIDS Coalition to Unleash Power, New York (ACT UP NY): A Direct Action Political Model of Community Research for AIDS Prevention," in AIDS Prevention and Services: Community Based Research, ed. J. Van Vugt (Westport, Conn.: Bergin Garvey, forthcoming).

42. On the cultural sources of ACT UP's representational politics, see also Stephen O. Murray, American Gay (Chicago: Univ. of Chicago Press, 1996), chapter 5.

43. Gamson, "Silence, Death, and the Invisible Enemy," 354-355. For the literature on "new social movements," see the sources cited in the introduction of my book, note 87.

44. On ACT UP's demonstrations as "performances," see Cindy J. Kistenberg, "Theatrical Intervention in the AIDS Crisis: Performance, Politics, and Social Change" (Ph.D. diss., Louisiana State University, 1992).

45. David Firestone, "A Monument to AIDS: GMHC's New Six-Story Home Is a Symbol of 'Success' for Service Organizations That Would Rather Go Out of Business," Newsday, 29 December 1988, II-4.

46. Elbaz, "Sociology of AIDS Activism," 65-66, 71-77.

47. David Barr, interview by author, tape recording, New York City, 28 April 1994.

48. Michelle Roland, interview by author, tape recording, San Francisco, 18 December 1993.

49. Roland, interview; Mark Harrington, interview by author, tape recording, New York City, 29 April 1994; Brenda Lein, interview by author, tape recording, San Francisco, 18-19 December 1993.

50. Larry Kramer, Reports from the Holocaust: The Making of an AIDS Activist (New York: St. Martin's, 1989), 265, 270 (emphasis in the original).

51. Early debates involving AIDS, drug regulation, and access to experimental medications have been well described by Arno and Feiden in Against the Odds and Jonathan Kwitny in Acceptable Risks (New York: Poseidon Press, 1992).

52. Frank E. Young et al., "The FDA's New Procedures for the Use of Investigational Drugs in Treatment," Journal of the American Medical Association 259 (April 15, 1988): 2267-2270.

53. Larry Kramer, "The F.D.A.'s Callous Response to AIDS," New York Times, 23 March 1987, A-19 (op-ed).

54. Martin Delaney, "The Case for Patient Access to Experimental Therapy," Journal of Infectious Diseases 159 (March 1989): 416-419.

55. Barr, interview.

56. James C. Petersen and Gerald E. Markle, "The Laetrile Phenomenon: An Overview," in Politics, Science, and Cancer: The Laetrile Phenomenon, ed. Gerald E. Markle and James C. Petersen (Boulder, Colo.: Westview Press, 1980), 1-10.

57. John S. James, "FDA Reform: Major New Position Paper," AIDS Treatment News, 3 June 1988.

58. Gina Kolata, "Odd Alliance Would Speed New Drugs," New York Times, 26 November 1988, A-9.

59. "A New Era for New Drugs," Wall Street Journal, 13 March 1987, 18 (editorial).

60. Jonathan Kwitny has extensively profiled the most famous such courier, a Los Angeles nurse named Jim Corti, nicknamed "Dextran Man," in Acceptable Risks.

61. Miranda Kolbe, "A PWA Movement of Guerilla Clinics," Gay Community News, 7 August 1988, 8.

62. "Clinic Update," PI Perspectives, October 1987.

63. Gina Kolata, "AIDS Patients and Their Above-Ground Underground," New York Times, 10 July 1988, 32 (section 4).

64. "FDA Allows AIDS Patients to Import Banned Drugs," Los Angeles Times, 24 July 1988, 18.

65. Philip M. Boffey, "F.D.A. Will Allow AIDS Patients to Import Unapproved Medicines," New York Times, 24 July 1988, A-1; Philip M. Boffey, "Importing AIDS Drugs: Analysis of F.D.A. Policy," New York Times, 26 July 1988, C-1.

66. William Booth, "An Underground Drug for AIDS," Science 241 (9 September 1988): 1279.

67. Jim Eigo et al., "FDA Action Handbook" (ACT UP/New York, New York, 21 September, 1988, photocopy), 1.

68. See Scott A. Hunt and Robert D. Benford, "Identity Talk in the Peace and Justice Movement," Journal of Contemporary Ethnography 22 (January 1994): 488-517; Scott A. Hunt, Robert D. Benford, and David A. Snow, "Identity Fields: Framing Processes and the Social Construction of Movement Identities," in New Social Movements: From Ideology to Identity, ed. Enrique Laraña, Hank Johnston, and Joseph R. Gusfield (Philadelphia: Temple Univ. Press, 1994), 185-208.

69. Eigo et al., "FDA Action Handbook," 17.

70. Chris Bull, "Seizing Control of the FDA," Gay Community News, 16 October 1988, 1, 3.

71. Crimp and Rolston, AIDS Demographics, 76.

72. Ibid., 78-81.

73. Barr, interview.

74. James M. Jasper and Dorothy Nelkin, The Animal Rights Crusade: The Growth of a Moral Protest (New York: Free Press, 1992).

75. Harrington, interview.

76. "The FDA for Itself," Wall Street Journal, 13 October 1988 (editorial).

77. "FDA Relaxes Drug Access Policy," AIDS Treatment News, 29 July 1988.

78. Ellen C. Cooper, "Controlled Clinical Trials of AIDS Drugs: The Best Hope," Journal of the American Medical Association 261 (28 April 1989): 2445.

79. Cooper, interview.

80. See Cooper's comments in Philip M. Boffey, "Washington Talk: Food and Drug Administration: At Fulcrum of Conflict, Regulator of AIDS Drugs," New York Times, 19 August 1988, A-13.

81. Martin Delaney, "Patient Access to Experimental Therapy," Journal of the American Medical Association 261 (28 April 1989): 2444, 2447.

82. The text from this presentation was published as: Martin Delaney, "The Case for Patient Access to Experimental Therapy," Journal of Infectious Diseases 159 (March 1989): 416-419.

83. On "community" as a "micro-mobilization context" for social movement formation, see Clarence Y. H. Lo, "Communities of Challengers in Social Movement Theory," in Frontiers in Social Movement Theory, ed. Aldon D. Morris and Carol McClurg Mueller (New Haven: Yale Univ. Press, 1992), 224-247.

84. Kolbe, "PWA Movement of Guerrilla Clinics," 8.

85. Nussbaum, Good Intentions, 189-192.

86. The quote is from an obituary following Zysman's death from HIV-related causes in 1993 at the age of 38: Obituaries, AAPHR Reporter, fall 1993, 28.

87. Antiviral Advisory Committee, meeting transcript (Food and Drug Administration, Bethesda, Md., 13-14 February 1991, photocopy), 50.

88. See Pierre Bourdieu and Loïc J. D. Wacquant, An Invitation to Reflexive Sociology (Chicago: Univ. of Chicago Press, 1992), 98-99.

89. David Handelman, "Act Up in Anger," Rolling Stone, 8 March 1990, 80-90, 116.

90. Harrington, interview.

91. Harrington, interview; Handelman, "Act Up in Anger."

92. On the struggles and tensions between the humanistic and the technical intelligentsia, see Alvin W. Gouldner, The Future of Intellectuals and the Rise of the New Class (New York: Oxford Univ. Press, 1979).

93. Quoted in Arno and Feiden, Against the Odds, 10.

94. Steven Shapin, "Science and the Public," in Companion to the History of Modern Science, ed. R. C. Olby et al. (London: Routledge, 1990), 990-1007, quote from 993.

95. G'dali Braverman, interview by author, tape recording, San Francisco, 17 December 1993.

96. Brenda Lein, interview by author, tape recording, San Francisco, 18-19 December 1993.

97. See Jasper and Nelkin, Animal Rights Crusade, 7.

98. Louis Lasagna, interview by author, tape recording, Boston, 26 October 1994.

99. Harrington, interview.

100. See Barbara Epstein, Political Protest and Cultural Revolution: Non-violent Direct Action in the 1970s and 1980s (Berkeley: Univ. of California Press, 1991), 122.

101. "Evaluating New Treatment Alternatives," PI Perspectives, October 1987.

102. Ibid.

Chapter 7 The Critique of Pure Science

1. Michael Specter, "Pressure from AIDS Activists has Transformed Drug Testing," Washington Post, 2 July 1989, A-1.

2. See Peter S. Arno and Karyn L. Feiden, Against the Odds: The Story of AIDS Drug Development, Politics and Profits (New York: HarperCollins, 1992), chapter 13.

3. Anthony S. Fauci, "AIDS—Challenges to Basic and Clinical Biomedical Research," Academic Medicine 64 (March 1989): 117.

4. J. Eigo and M. Harrington, "AIDS Drugs and the Politics of Biomedicine" (abstract of presentation at the Fifth International Conference on AIDS), Montreal, 4-9 June 1989; J. Eigo et al., "Drug Regulation Gone Wrong: The Saga of Ganciclovir" (abstract of presentation at the Fifth International Conference on AIDS), Montreal, 4-9 June 1989.

5. Arno and Feiden, Against the Odds, 173-174.

6. Gina Kolata, "AIDS Researcher Seeks Wide Access to Drugs in Tests," New York Times, 26 June 1989, A-1.

7. Ibid.

8. On parallel track and the approval of ddI, see Jeffrey Levi, "Unproven AIDS Therapies: The Food and Drug Administration and ddI," in Biomedical Politics, ed. Kathi E. Hanna (Washington, D.C.: National Academy Press, 1991), 9-37.

9. Anthony Fauci, interview by author, tape recording, Bethesda, Md., 31 October 1994.

10. For a formal expression of the idea, see Samuel Broder, "Controlled Trial Methodology and Progress in Treatment of the Acquired Immunodeficiency Syndrome (AIDS): A Quid Pro Quo," Annals of Internal Medicine 110 (15 March 1989): 417-418.

11. Philip J. Hilts, "Drug Said to Help AIDS Cases with Virus but No Symptoms," New York Times, 18 August 1989, A-1.

12. Gina Kolata, "Strong Evidence Discovered That AZT Holds Off AIDS," New York Times, 4 August 1989, A-1.

13. Hilts, "Drug Said to Help AIDS Cases."

14. Paul A. Volberding et al., "Zidovudine in Asymptomatic Human Immunodeficiency Virus Infection," New England Journal of Medicine 322 (5 April 1990): 941-949.

15. Paul Volberding, interview by author, tape recording, San Francisco, 7 July 1994.

16. Volberding et al., "Zidovudine in Asymptomatic Human Immunodeficiency Virus Infection," 948.

Zidovudine is the name that tends to get used in the medical journals and at conferences. It is a testament to the drug's construction as a "boundary object," existing simultaneously in multiple social worlds, that it bears different names in different places (azidothymidine, AZT, zidovudine, and Retrovir). (On "boundary objects" in science, see Susan Leigh Star and James R. Griesemer, "Institutional Ecology, 'Translations' and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39," Social Studies of Science 19 [August 1989]: 387-420.)

17. Volberding et al., "Zidovudine in Asymptomatic Human Immunodeficiency Virus Infection," 948.

18. See Donald I. Abrams, "On the Matter of Survival," BETA, November 1992.

19. Gerald H. Friedland, "Early Treatment for HIV: The Time Has Come," New England Journal of Medicine 322 (5 April 1990): 1001 (editorial).

20. On the relation between diagnostic conditions and identity in AIDS, see the discussion of "becoming a person with HIV" in Rose Weitz, Life with AIDS (New Brunswick, N.J.: Rutgers Univ. Press, 1991), chapter 4.

21. Friedland, "Early Treatment for HIV," 1001.

22. "Incorporation of Trial Results into Clinical Practice: Open Discussion," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S145-S147.

23. "Recommendations for Zidovudine: Early Infection," Journal of the American Medical Association 263 (23-30 March 1990): 1606, 1609. This is a summary of the "State-of-the-Art Conference on AZT Therapy for Early HIV Infection" sponsored by NIAID, 3-4 March 1990.

24. "U.S. Urges Wider Use of AZT for Adults with AIDS Virus," New York Times, 3 March 1990, A-10.

25. Neville Hodgkinson, "The Cure That Failed," Sunday Times (London), 4 April 1993, Features section.

26. "AZT News: The Final Chapter?" PI Perspectives, November 1989.

27. Gina Kolata, "Medical Data: Who Should Hear It First?" New York Times, 22 May 1990, C-1.

28. John Lauritsen, "Science by Press Release," New York Native, 21 August 1989, 20-22; Kolata, "Medical Data: Who Should Hear It First?"

29. Kolata, "Medical Data: Who Should Hear It First?"

30. "An Open Letter to Mayor Koch," New York Native, 21 August 1989, 23.

31. John Lauritsen, "First Things First: Some Thoughts on the 'AIDS Virus' and AZT," New York Native, 1 June 1987, 1, 14-16 (cover story).

32. John Lauritsen, Poison by Prescription: The AZT Story (New York: Asklepios, 1990), 19.

33. Susan Leigh Star, "Scientific Work and Uncertainty," Social Studies of Science 15 (August 1985): 391-427, quote from 392.

34. H. M. Collins, "Certainty and the Public Understanding of Science: Science on Television," Social Studies of Science 17 (November 1987): 692.

35. Harry Collins, Changing Order: Replication and Induction in Scientific Practice, 2d ed. (Chicago: Univ. of Chicago Press, 1992), 162.

36. Gina Kolata, "Recruiting Problems in New York Slowing U.S. Trials of AIDS Drug," New York Times, 18 December 1988, A-1.

37. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin's, 1987), 539-543.

38. See Michael Wright, "East West Gulf, Project Inform's Consensus Statement on ddI and ddC and Ellen Cooper Resignation Fallout?" ACT UP/Golden Gate Treatment Issues Report 2, no. 3 (1991).

39. Paul Harding Douglas, ed., Improving the Odds: 1988 (New York: Columbia Gay Health Advocacy Project, 1989), 28 (proceedings of conference held at Columbia University, November 19, 1988). For analytical commentary see also Paula A. Treichler, "How to Have Theory in an Epidemic: The Evolution of AIDS Treatment Activism," in Technoculture, ed. Constance Penley and Andrew Ross (Minneapolis and Oxford: Univ. of Minnesota Press, 1991), 83-93.

40. "AZT-Resistant Strains of HIV Appear," PI Perspectives, March 1989.

41. On obligatory passage points in science, see Bruno Latour, Science in Action (Cambridge, Mass.: Harvard Univ. Press, 1987). For a similar analysis of Delaney's reliance on AZT, see Treichler, "How to Have Theory in an Epidemic," 93.

42. "AZT News: The Final Chapter?"

43. "Zidovudine for Symptomless HIV Infection," Lancet 335 (7 April 1990): 821-822 (editorial).

44. Anthony J. Pinching, "Zidovudine in Asymptomatic HIV Infection: Knowledge and Uncertainty," International Journal of STD & AIDS 2 (May-June 1991): 157-161 (editorial review).

45. See Meurig Horton, "Bugs, Drugs and Placebos: The Opulence of Truth, or How to Make a Treatment Decision in an Epidemic," in Taking Liberties: AIDS and Cultural Politics, ed. Erica Carter and Simon Watney (London: Serpent's Tail, 1989), 161-181.

46. Jeremy Cherfas, "AZT Still on Trial," Science 246 (17 November 1989): 882.

47. Ibid.

48. Susan Ellenberg, interview by author, tape recording, Rockville, Md., 25 April 1994.

49. Martin Hirsch, interview by author, tape recording, Boston, 25 October 1994.

50. Cherfas, "AZT Still on Trial."

51. Ellenberg, interview.

52. David Byar, "Design Considerations for AIDS Trials," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S16-S19.

53. See William Francis Patrick Crowley III, Gaining Access: The Politics of AIDS Clinical Drug Trials in Boston (undergraduate thesis, Harvard College, 1991), 40.

54. Rebecca Smith, "AIDS Drug Trials," Science 246 (22 December 1989): 1547 (letter to the editor).

55. From the public forum "Clinical Trials," Davies Hospital, San Francisco, 6 October 1990 (author's field notes).

56. David Byar, quoted in Joseph Palca, "AIDS Drug Trials Enter New Age," Science 246 (6 October 1989): 20. For other criticisms of researchers' assumptions, see, for example, Byar, "Design Considerations for AIDS Trials." For an example of the role of biostatisticians in rethinking AIDS trials in the Boston area, see also Crowley, Gaining Access, 51.

57. Rebecca Smith, interview by author, tape recording, Providence, R.I., 26 October 1994.

58. Ellenberg, interview.

59. Susan S. Ellenberg et al., "Studying Treatments for AIDS: New Challenges for Clinical Trials—A Panel Discussion at the 1990 Annual Meeting of the Society for Clinical Trials," Controlled Clinical Trials 13 (August 1992): 272-292.

60. Douglas Richman, interview by author, tape recording, San Diego, 1 June 1994.

61. Smith, interview.

62. Fauci, interview. On "situated knowledges," see Donna J. Haraway, Simians, Cyborgs, and Women: The Reinvention of Nature (New York: Routledge, 1991), chapter 9.

63. Smith, interview.

64. Deciding to Enter an AIDS/HIV Drug Trial (New York: AIDS Treatment Registry, 1989).

65. Ellenberg, interview; Mark Harrington, interview by author, tape recording, New York City, 29 April 1994.

66. David Byar, "Design Options for AIDS Trials" (paper presented at the annual conference of the American Academy for the Advancement of Science, Washington, D.C., 17 February 1991), tape recorded proceedings.

67. D. Bruce Burlington, "Statutory and Regulatory Framework for Drug Approval," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S4-S9.

68. Jim Eigo, "How AIDS Will Change the Way We Test Drugs" (paper presented at the annual conference of the American Academy for the Advancement of Science, Washington, D.C., 17 February 1991), tape recorded proceedings.

69. Douglas Richman et al., "Design of Clinical Trials—Active Control (Equivalence) Trials," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S88-S91. This issue of the journal contains the transcript of the conference, which was held in the Washington, D.C., area in November 1989.

70. Paul Lietman et al., "Design of Clinical Trials—Approaches to Clinical Trials Design: Discussion," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S27-S36.

71. Paul A. Volberding, "Rationale for Variations in Clinical Trial Design in Different HIV Disease Stages," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S40-S44.

72. Donald Abrams, interview by author, tape recording, San Francisco, 16 December 1993.

73. Michelle Roland, interview by author, tape recording, Davis, Calif., 18 December 1993.

74. On this point, see also Crowley, Gaining Access.

75. Lietman et al., "Design of Clinical Trials—Approaches to Clinical Trial Design," S31.

76. Quoted in Tim Kingston, "Justice Gone Blind: CMV Patients Fight for Their Sight," Coming Up! February 1989, 4. Sutton died of AIDS-related causes on April 11, 1989.

77. "Alternative Approaches to Clinical Trials"; Smith, interview.

78. See Palca, "AIDS Drug Trials Enter New Age," S20.

79. Byar, "Design Considerations for AIDS Trials," S18.

80. Alvan R. Feinstein, "An Additional Basic Science for Clinical Medicine: II. The Limitations of Randomized Trials," Annals of Internal Medicine 99 (October 1983): 545.

81. Harry Milton Marks, "Ideas as Reforms: Therapeutic Experiments and Medical Practice, 1900-1980" (Ph.D. diss., Massachusetts Institute of Technology, 1987).

82. Robert J. Levine, Ethics and Regulation of Clinical Research (Baltimore: Urban & Schwarzenberg, 1986), 208; "Scientific Justification for Community-Based Trials," AIDS Treatment News, 23 September 1988.

83. Volberding, "Rationale for Variations in Clinical Trial Design," S41.

84. See Steven Shapin, "Cordelia's Love: Credibility and the Social Studies of Studies," Perspectives on Science 3, no. 3 (1995): 255-275, esp. 261-266.

85. Ellenberg, interview.

86. I am grateful to Evelleen Richards for discussion of similarities and differences between AIDS trials and cancer trials.

87. Eliot Marshall, "Quick Release of AIDS Drugs," Science 245 (28 July 1989): 345-347, quote from 345.

88. John S. James, "The Drug-Trials Debacle—And What to Do about It (Part I)," AIDS Treatment News, 21 April 1989.

89. "AIDS Treatment Research and Care Issues: The Need for Advocacy," AIDS Treatment News, 26 February 1988.

90. Cf. Pierre Bourdieu, "The Specificity of the Scientific Field and the Social Conditions of the Progress of Reason," Social Science Information 14 (December 1975): 19-47.

91. On the cultural significance of metaphors of purity and contamination, see Mary Douglas, Purity and Danger (New York: Routledge & Kegan Paul, 1979). On the "sacred" character of "pure science," see Sal Restivo, "The Social Roots of Pure Mathematics," in Theories of Science in Society, ed. Susan E. Cozzens and Thomas F. Gieryn (Bloomington: Indiana Univ. Press, 1990), 120-143.

92. Roland, interview.

93. See Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992).

94. From the session "Clinical Trials and Drug Development" at the VI International Conference on AIDS, San Francisco, 22 June 1990 (author's field notes).

95. Scott Brookie, "Unofficial Compound Q Trial Continues," Gay Community News, 30 July 1989, 3.

96. "Clinical Trials and Drug Development."

97. From the public forum "Community Outreach Session," held in conjunction with the VI International AIDS Conference, San Francisco, 22 June 1990 (author's field notes).

98. Robert Steinbrook, "AIDS Trials Shortchange Minorities and Drug Users," Los Angeles Times, 25 September 1989, 1.

99. J.E. D'Eramo et al., "Women and Minorities Have Less Access to AIDS Drug Trials" (abstract of presentation at the VII International Conference on AIDS, Florence, 16-21 June 1991).

100. Gina Kolata, "AIDS Research on New Drugs Bypasses Addicts and Women," New York Times, 5 January 1988, C-1.

101. Donald E. Craven et al., "AIDS in Intravenous Drug Users: Issues Related to Enrollment in Clinical Trials," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S48.

102. Quoted in Stephen B. Thomas and Sandra Crouse Quinn, "The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community," American Journal of Public Health 81 (November 1991): 1498-1505.

103. The survey was reported in the editorial "The AIDS 'Plot' against Blacks," New York Times, 12 May 1992, A-22.

104. The delay was due, in part, to Burroughs Wellcome's slowness in filing with the FDA; see Gina Kolata, "Hundreds of Children with AIDS Are Unable to Obtain AZT," New York Times, 23 September 1989, A-8.

105. Lisa Auer, "Developing a Clinical Research Agenda for Women," PI Perspectives, 9 October 1990.

106. Gina Kolata, "N.I.H. Neglects Women, Study Says," New York Times, 19 June 1990, C-6.

107. Scott Jaschik, "Report Says NIH Ignores Own Rules on Including Women in Its Research," Chronicle of Higher Education, 27 June 1990, A27.

108. Paul Cotton, "Examples Abound of Gaps in Medical Knowledge Because of Groups Excluded from Scientific Study," Journal of the American Medical Association 263 (23 February 1990): 1051, 1055.

109. Fauci, interview.

110. On recent trends toward the understanding of racial differences in genetic and biological terms, see Troy Duster, Backdoor to Eugenics (New York and London: Routledge, 1990).

111. Malcolm Gladwell, "AIDS Study Suggests Drug May Have Racial Limits," Washington Post, 15 February 1991, A-4.

112. Gina Kolata, "Federal Study Questions Ability of AZT to Delay AIDS," New York Times, 15 February 1991, A-1; see also Gina Kolata, "In Medical Research Equal Opportunity Doesn't Always Apply," New York Times, 10 March 1991, 16 (Section 4).

113. Quoted in Paul Rykoff Coleman, "AZT Efficacy Study Angers Blacks and Latinos," Outweek, 6 March 1991, 28, 29, 102. For more on the issue of AZT's efficacy in different racial groups, see Gina Kolata, "AIDS Drug Unaffected by Race or Sex," New York Times, 20 November 1991, A-25.

114. Paul Cotton, "Is There Still Too Much Extrapolation from Data on Middle-Aged White Men?" Journal of the American Medical Association 263 (23 February 1990): 1049-1050.

115. "Incorporation of Trial Results into Clinical Practice," S146.

116. David P. Byar et al., "Sounding Board: Design Considerations for AIDS Trials," New England Journal of Medicine 323 (8 November 1990): 1343-1347.

117. Thomas C. Merigan, "Sounding Board: You Can Teach an Old Dog New Tricks: How AIDS Trials Are Pioneering New Strategies," New England Journal of Medicine 323 (8 November 1990): 1341-1343.

118. Carol Levine, Nancy Neveloff Dubler, and Robert J. Levine, "Building a New Consensus: Ethical Principles and Policies for Clinical Research on HIV/AIDS," AIDS Patient Care, April 1992, 67-85.

119. Robert J. Levine, "Community Consultation in Clinical Trials" (paper presented at the annual conference of the American Academy for the Advancement of Science, Washington, D.C., 17 February 1991), tape recorded proceedings.

120. Byar, "Design Options for AIDS Trials."

121. Eigo, "How AIDS Will Change the Way We Test Drugs."

Chapter 8 Dilemmas and Divisions in Science and Politics

1. See, for example, Samuel Broder, "Controlled Trial Methodology and Progress in Treatment of the Acquired Immunodeficiency Syndrome (AIDS): A Quid Pro Quo," Annals of Internal Medicine 110 (15 March 1989): 417-418.

2. See the published report of the study in Tze-Chiang Meng et al., "Combination Therapy with Zidovudine and Dideoxycytidine in Patients with Advanced Human Immunodeficiency Virus Infection: A Phase I/II Study," Annals of Internal Medicine 116 (1 January 1992): 13-20.

3. John S. James, "ddC Background," AIDS Treatment News, 21 February 1992.

4. Meng et al., "Combination Therapy with Zidovudine and Dideoxycytidine," 18-19.

5. G'dali Braverman, interview by author, tape recording, San Francisco, 17 December 1993.

6. James, "ddC Background."

7. Warren J. Blumenfeld, "FDA, Buyers Clubs Negotiate New Relationship," Advocate, 19 November 1991, 62-63.

8. Gina Kolata, "Patients Going Underground to Buy Experimental Drugs," New York Times, 4 November 1991, A-1.

9. Ibid.

10. Rachel Nowak, "Conditional Approval Touted," Nature 352 (8 August 1991): 464.

11. Blumenfeld, "FDA, Buyers Clubs Negotiate New Relationship."

12. Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992), 97.

13. Blumenfeld, "FDA, Buyers Clubs Negotiate New Relationship."

14. Deborah R. Gordon, "Clinical Science and Clinical Expertise: Changing Boundaries between Art and Science in Medicine," in Biomedicine Examined, ed. M. Lock and D. R. Gordon (Dordrecht, Holland: Kluwer Academic Publishing, 1988), 257-295, quote from 257; Harry Milton Marks, "Ideas as Reforms: Therapeutic Experiments and Medical Practice, 1900-1980" (Ph.D. diss., Massachusetts Institute of Technology, 1987).

15. John S. James, "ddC: AZT Combination Approval Recommended," AIDS Treatment News, 1 May 1992.

16. Mark Harrington, "Gina Kolata Sings the ddI Blues (Again)," Outweek, 28 March 1990, 34-35, quote from 35.

17. John S. James, "ddI and ddC: The Call for Early Approval," AIDS Treatment News, 5 October 1990.

18. John S. James, "Montreal Conference: Overview and Comment," AIDS Treatment News, 29 June 1989.

19. John S. James, "Why No Antivirals: A Case History of Failed Trial Design," AIDS Treatment News, 29 June 1989.

20. Andrew R. Moss, "Laboratory Markers as Potential Surrogates for Clinical Outcomes in AIDS Trials," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990), S69-S71; David Amato and Stephen W. Lagakos, "Considerations in the Selection of End Points for AIDS Clinical Trials," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990), S64-S68.

21. "Surrogate Endpoints in Evaluating the Effectiveness of Drugs against HIV Infection and AIDS" (transcript of conference of the National Academy of Sciences, Washington, D.C., 11-12 September 1989, photocopy).

22. This account is from Moss, "Laboratory Markers as Potential Surrogates."

23. See the discussion in Kwitny, Acceptable Risks, 225, 297, 331.

24. Amato and Lagakos, "Considerations in the Selection of Endpoints," S66.

25. "Design of Clinical Trials—End Points: Open Discussion," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S75.

26. "Surrogate Endpoints in Evaluating the Effectiveness of Drugs," 100-101.

27. "A Barrier Falls at the FDA," PI Perspectives, April 1991.

28. Paul Cotton, "HIV Surrogate Markers Weighed," Journal of the American Medical Association 265 (20 March 1991): 1357, 1361, 1362.

29. See Bruce Nussbaum, Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight against AIDS (New York: Atlantic Monthly Press, 1990); Kwitny, Acceptable Risks.

30. John S. James, "Drug Development: What's Needed Now?" AIDS Treatment News, 8 March 1990.

31. On the role of "standing-for" (or "metonymical") relationships in the construction of scientific credibility, see Steven Shapin, "Cordelia's Love: Credibility and the Social Studies of Studies," Perspectives on Science 3, no. 3 (1995): 255-275.

32. James, "Drug Development: What's Needed Now?"

33. John S. James, "The Wrong Nightmare: The Worst Delay of Clinical Trials," AIDS Treatment News, 21 December 1989.

34. Tim Kingston, "The Coming Storm over Expedited Drug Approval," San Francisco Bay Times, June 1991, 10-12.

35. John S. James, "Expanded Access to Experimental Drugs: Interview with David Feigal, M.D., of the FDA," AIDS Treatment News, 30 May 1993.

36. Paul Houston, "Administration Revamps Drug-Approval Policies," Los Angeles Times, 10 April 1992, A-1.

37. Kingston, "Coming Storm," 12.

38. Henry A. Waxman, letter to Dr. David Kessler, Washington, D.C., 10 April 1991.

39. Martin Delaney, letter to Congressman Henry Waxman, San Francisco, 2 May 1991.

40. Paul Cotton, "Surrogate Markers of Disease Studied as Means of Determining AIDS Drugs' Effectiveness," Journal of the American Medical Association 264 (14 November 1990): 2362, 2365.

41. John S. James, "ddI and ddC Approval Effort—Interview with Martin Delaney," AIDS Treatment News, 7 December 1990.

42. See Kwitny, Acceptable Risks, 383; Victor F. Zonana, "Top AIDS Drug Regulator to Step Down," Los Angeles Times, 22 December 1990, A-6.

43. "Barrier Falls at the FDA."

44. Antiviral Advisory Committee, meeting transcript (Food and Drug Administration, Bethesda, Md., 13-14 February 1991, photocopy), 162-163.

45. Cotton, "HIV Surrogate Markers Weighed," 1362.

46. Kwitny, Acceptable Risks, 391.

47. "ddI Approval: Today and Tomorrow," PI Perspectives, October 1991.

48. Ibid.

49. Paul Cotton, "FDA 'Pushing Envelope' on AIDS Drug," Journal of the American Medical Association 266 (14 August 1991): 757-758, quotes from 757.

50. Donald Abrams, interview by author, tape recording, San Francisco, 16 December 1993.

51. Sheila Jasanoff, The Fifth Branch: Science Advisers as Policymakers (Cambridge, Mass.: Harvard Univ. Press, 1990), 178, 229.

52. Cotton, "FDA 'Pushing Envelope,'" 757.

53. Ibid.

54. Gina Kolata, "U.S. Panel Backs Sale of Experimental AIDS Drug," New York Times, 20 July 1991, A-1.

55. Gina Kolata, "Speeded Approval of AIDS Drug Is Termed Justified by Test Data," New York Times, 20 April 1992, C-3.

56. See James, "ddC: AZT Combination Approval Recommended."

57. David Feigal, interview by author, tape recording, Rockville, Md., 1 November 1994.

58. Michael C. Botkin, "ddC's Bumpy Road," Bay Area Reporter, 7 May 1992, 20, 23.

59. Liz Hunt, "Panel Recommends Conditional Approval for New AIDS Drug," Washington Post, 20 July 1991, A-9.

60. Botkin, "ddC's Bumpy Road," 23.

61. Marlene Cimons, "FDA Approves AIDS Drug for Use with AZT," Los Angeles Times, 23 June 1992, A-1.

62. Botkin, "ddC's Bumpy Road," 20.

63. Ibid.

64. Jon Cohen, "Searching for Markers on the AIDS Trail," Science 258 (16 October 1992): 388-390, quote from 388 (brackets are Cohen's).

65. Deborah Cotton, interview by author, tape recording, Boston, Mass., 25 October 1994.

66. Cohen, "Searching for Markers," 389-390.

67. Ibid., 390.

68. "AIDS Treatment Research Agenda" (ACT UP/New York Treatment & Data Committee, New York, 1990, photocopy), 2.

69. Larry Kramer, "Second-Rated to Death," Outweek, 24 October 1990, 48-50.

70. "AIDS Treatment Research Agenda," 9, 11-13.

71. Gina Kolata, "AIDS Research Finds 13 Vulnerable Spots in Virus Life Cycle," New York Times, 2 October 1990, C-3; see also Hiroaki Mitsuya, Robert Yarchoan, and Samuel Broder, "Molecular Targets for AIDS Therapy," Science 249 (28 September 1990): 1533-1544.

72. John S. James, "AIDS Antivirals: A New Generation," AIDS Treatment News, 19 April 1991.

73. John S. James, "1992: Treatments to Watch," AIDS Treatment News, 23 December 1991.

74. David Baltimore and Mark B. Feinberg, "HIV Revealed: Toward a Natural History of the Infection," New England Journal of Medicine 321 (14 December 1989): 1673 (editorial).

75. See "Therapeutic Vaccines," PI Perspectives, April 1992.

76. Veronica T. Jennings and Malcolm Gladwell, "1,000 Rally for More Vigorous AIDS Effort," Washington Post, 22 May 1990, B-1.

77. John S. James, "ACT UP Calls for NIH Demonstration May 21," AIDS Treatment News, 28 April 1990.

78. Mark Harrington, "Eating Where They ...," Outweek, 18 February 1990, 34; Mark Harrington, "Anatomy of a Disaster: Why Is Federal AIDS Research at a Standstill?" Village Voice, 13 March 1990, 40-41.

79. See David Concar, "Protests Oust Science at AIDS Conference," Nature 345 (28 June 1990): 753.

80. Victor F. Zonana, "Did AIDS Protest Go Too Far?" Los Angeles Times, 2 July 1990, A-3.

81. Anthony Fauci, interview by author, tape recording, Bethesda, Md., 31 October 1994.

82. Nussbaum, Good Intentions, 306-307.

83. Arno and Feiden, Against the Odds, 227-229; David Barr, interview by author, tape recording, New York City, 28 April 1994.

84. Arno and Feiden, Against the Odds, 234-235.

85. Philip J. Hilts, "82 Held in Protest on Pace of AIDS Research," New York Times, 22 May 1990, C-2; Arno and Feiden, Against the Odds, 232.

86. Mark Harrington, interview by author, tape recording, New York City, 29 April 1994.

87. See the arguments in the introduction and chapter 1.

88. Gena Corea, The Invisible Epidemic: The Story of Women and AIDS (New York: HarperCollins, 1992), 265.

89. See Cindy Patton, "Resistance and the Erotic: Reclaiming History, Setting Strategy as We Face AIDS," Radical America 20 (November-December 1986): 68-78.

90. Maxine Wolfe, "The AIDS Coalition to Unleash Power, New York (ACT UP NY): A Direct Action Political Model of Community Research for AIDS Prevention," in AIDS Prevention and Services: Community Based Research, ed. J. Van Vugt (Westport, Conn.: Bergin Garvey, forthcoming). On the varieties of AIDS activism by women, see also Beth E. Schneider and Nancy E. Stoller, eds., Women Resisting AIDS: Feminist Strategies of Empowerment (Philadelphia: Temple Univ. Press, 1995).

91. Cathy Jean Cohen, "Power, Resistance and the Construction of Crisis: Marginalized Communities Respond to AIDS" (Ph.D. diss., University of Michigan, 1993), 325.

92. Moisés Agosto, interview by author, tape recording, New York City, 26 April 1994.

93. Jonathan Wadleigh, interview by author, tape recording, Brookline, Mass., 25 October 1994.

94. Ibid.

95. Anne-Christine d'Adesky, "Empowerment or Co-Optation?" The Nation, 11 February 1991, 158-160.

96. See Carrie Wofford, "Sitting at the Table," Outweek, 3 April 1991, 22-23; Cohen, "Power, Resistance, and the Construction of Crisis," 320-324.

97. For a range of perspectives on the causes and significance of the ACT UP/San Francisco split, see: Tim Vollmer, "ACT-UP/SF Splits in Two over Consensus, Focus," San Francisco Sentinel, 20 September 1990, 1; Jesse Dobson, "Why ACT-UP Split in Two" (same issue), 4; Kate Raphael, "ACT-UP: Growing Apart" (same issue), 5; Michele DeRanleau, "How the 'Conscience of an Epidemic' Unraveled," San Francisco Examiner, 1 October 1990, A-15.

98. Risa Dennenberg, "Women, AIDS, Lesbians and Politics," Outweek, 20 March 1991, 27.

99. Harrington, interview.

100. Barr, interview.

101. Gilbert Elbaz, "The Sociology of AIDS Activism, the Case of ACT UP/New York, 1987-1992" (Ph.D. diss., City University of New York, 1992), 488.

102. Michelle Roland, interview by author, tape recording, Davis, Calif., 18 December 1993.

103. Barr, interview.

104. Theo Smart, "This Side of Despair," QW, 13 September 1992, 43-44, 69.

105. Mark Golden, "ACT UP Redux," QW, 11 October 1992, 22-25.

106. Jason Heyman, interview by author, tape recording, San Francisco, 12 July 1994.

107. On boundary work in science, see Thomas F. Gieryn, "Boundary Work and the Demarcation of Science from Non-Science: Strains and Interests in Professional Ideologies of Scientists," American Sociological Review 48 (December 1983): 781-795; Thomas F. Gieryn, "Boundaries of Science," in Handbook of Science and Technology Studies, ed. Sheila Jasanoff et al. (Thousand Oaks, Calif.: Sage, 1995), 393-443.

108. Heyman, interview.

Chapter 9 Clinical Trials and Tribulations

1. Theo Smart, "This Side of Despair," QW, 13 September 1992, 44.

2. Jayne Garrison, "Experts Glum as New Drugs for AIDS Flop," San Francisco Examiner, 2 February 1992, A-1.

3. Jayne Garrison, "Activists Despondent and the Movement Is Splintering," San Francisco Examiner, 2 February 1992, A-10.

4. Garrison, "Experts Glum as New Drugs for AIDS Flop." Arguably, activists were too quick to dismiss the class of non-nucleoside reverse transcriptase inhibitors, since some of them, such as nevirapine, would later attract attention when used in higher doses or in combination with other drugs. In this sense, activist impatience risked contributing to the discrediting of some drugs, just as activist enthusiasm magnified the credibility of others. See Smart, "This Side of Despair."

5. Delaney's rebuttal took the form of a letter to the editor of the Examiner, reprinted in "No Room for Hope?" PI Perspectives, April 1992.

6. John S. James, "Tat Inhibitor Trials Canceled; Business Reasons Cited," AIDS Treatment News, 17 May 1991.

7. John S. James, "Tat Inhibitor Update," AIDS Treatment News, 3 January 1992.

8. This letter was printed in Ronald A. Baker, "Epidemic of Mistrust: Hoffman-LaRoche and the Treatment Activist Community," BETA, March 1993.

9. Martin Delaney, "The TAT Offensive," Advocate, 9 March 1993, 35.

10. John S. James, "AIDS Treatments 1992/1993: Where Are We Now?" AIDS Treatment News, 1 January 1993.

11. Lawrence K. Altman, "At AIDS Talks, Reality Weighs Down Hope," New York Times, 26 July 1992, A-1.

12. Gregg Gonsalves and Mark Harrington, "AIDS Research at the NIH: A Critical Review. Part I: Summary" (Treatment Action Group, New York, 1992, photocopy).

13. Gregg Gonsalves, interview by author, tape recording, New York City, 28 April 1994.

14. Gonsalves and Harrington, "AIDS Research at the NIH," 1, 12-13.

15. Ibid., 7.

16. Jon Cohen, "Reorganization Plan Draws Fire at NIH," Science 259 (5 February 1993): 753-754.

17. John Lauritsen, Poison by Prescription: The AZT Story (New York: Asklepios, 1990), 121; "Pimping for AZT," New York Native, 8 October 1990, 4.

18. Michael Broder, "Wellcome Gives $1 Mil to Community Research," QW, 12 July 1992, 16, 19.

19. Robert Massa, "Drug Money: Should Activists Take Donations from Pharmaceuticals?" Village Voice, 23 June 1992, 18.

20. From the leaflet "Time & Lives Are Running Out!!!" (San Francisco: ACT UP/Underground, 1992, photocopy); for a discussion see Michael C. Botkin, "The 1992 Scabbies," Bay Area Reporter, 21 January 1993, 18.

21. Gina Kolata, "After 5 Years of Use, Doubt Still Clouds Leading AIDS Drug," New York Times, 2 June 1992, C-3.

22. One study sometimes cited as demonstrating that AZT prolongs life, in fact—by its own account—failed to distinguish between the benefits of AZT and the benefits of "other aspects of care associated with zidovudine [AZT] therapy," such as PCP prophylaxis, in the group studied. See Richard D. Moore et al., "Zidovudine and the Natural History of the Acquired Immuno-deficiency Syndrome," New England Journal of Medicine 324 (16 May 1991): 1412-1416.

23. See Mark D. Smith, "Zidovudine: Does It Work for Everyone?" Journal of the American Medical Association 266 (20 November 1991): 2750-2751 (editorial).

24. D. Cotton and D. Weinberg, "Survey Results: Treatment Decisions in HIV Care," AIDS Clinical Care 4 (1991): 85-91.

25. Jean-Pierre Aboulker and Ann Marie Swart, "Preliminary Analysis of the Concorde Trial," Lancet 341 (3 April 1993): 889-890 (letter to the editor).

26. Tim Kingston, "The Concorde AZT Trial: Does It Fly?" San Francisco Bay Times, 22 April 1993, 6-7.

27. J. Lange, "Antiretroviral Treatment," Session PS-03-2, IX International Conference on AIDS, Berlin, 8 June 1993.

28. John S. James, "AZT, Early Intervention, and the Concorde Controversy," AIDS Treatment News, 23 April 1993.

29. Kingston, "Concorde AZT Trial."

30. David Gold, "The Concorde Study," Treatment Issues, May 1993; Lawrence K. Altman, "New Study Questions Use of AZT in Early Treatment of AIDS Virus," New York Times, 1 April 1993, A-1.

31. Kingston, "Concorde AZT Trial."

32. "After Concorde," Treatment Issues, May 1993 (editorial).

33. Larry Kramer, "AZT Is Shit," Advocate, 18 May 1993, 80 (editorial).

34. Kingston, "Concorde AZT Trial."

35. Linda Marsa, "Toxic Hope: Widely Embraced, the AIDS Drug is Now Under Heavy Fire," Los Angeles Times, 20 June 1993, 14.

36. Charles R. Caulfield, "AZT: People or Profits?" San Francisco Sentinel, 8 April 1993, 1, 19-20.

37. Quoted in Caulfield, "AZT: People or Profits?" 20.

38. Neville Hodgkinson, "New Realism Puts the Brake on HIV Bandwagon," Sunday Times (London), 9 May 1993, Features section.

39. Neville Hodgkinson, "How Giant Drug Firm Funds the Aids Lobby," Sunday Times (London), 30 May 1993, Home News section; "GAG Claims Doctors Are Killing Babies," Capital Gay, 4 June 1993, 9.

40. See the statement by Marcus Conant in Kingston, "Concorde AZT Trial"; and see ACT UP/Golden Gate Treatment Issues Committee, "ACT UP/ Golden Gate Responds to AZT Criticism," San Francisco Sentinel, 15 April 1993, 14 (op-ed).

41. Kim Painter, "Despite Questions, Experts Still Back AZT," USA Today, 5 April 1993, 6D.

42. Altman, "New Study Questions Use of AZT."

43. "After Concorde," Treatment Issues, May 1993 (editorial).

44. James, "AZT, Early Intervention, and the Concorde Controversy."

45. See Anastasios Tsiatis, "Intent-to-Treat Analysis," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S120-S123.

46. Kingston, "Concorde AZT Trial"; see also the statement by Burroughs Wellcome in David Gold, "The Concorde Study," Treatment Issues, May 1993.

47. James, "AZT, Early Intervention, and the Concorde Controversy."

48. Kramer, "AZT Is Shit."

49. Lawrence K. Altman, "The Doctor's World: AIDS Study Casts Doubt on Value of Hastened Drug Approval in U.S.," New York Times, 6 April 1993, C-3.

50. "After Concorde."

51. Jon Cohen, "AIDS Research: The Mood Is Uncertain," Science 260 (28 May 1993): 1254-1265, quotes from 1254.

52. A. S. Fauci, "Pathogenesis of HIV Infection" (paper presented at Plenary Session 01, IX International Conference on AIDS, Berlin, 7 June 1993); J. Levy, "Mechanisms of Pathogenesis and Long-Term Survival with HIV/AIDS" (paper presented at Plenary Session 05, IX International Conference on AIDS, Berlin, 9 June 1993). Another perspective was presented by Montagnier in back-to-back presentations on 10 June 1993: "HIV, Cofactors and AIDS," Session OP-03-1; and "Report of the EEC Group: Mechanisms of CD4+ Lymphocyte Depletion," Session OP-03-2.

53. Jay A. Levy, "Pathogenesis of Human Immunodeficiency Virus Infection," Microbiological Reviews 57 (March 1993): 183-289.

54. Quoted in Dave Gilden, "Groping toward a New Understanding," San Francisco Bay Times, 17 June 1993, 14-15. McKean died of HIV-related causes in 1994.

55. Robin A. Weiss, "How Does HIV Cause AIDS?" Science 260 (28 May 1993): 1273-1279.

56. R. Gallo, "Perpectives for the Future Control of AIDS," Session OP-01-1, IX International Conference on AIDS, Berlin, 8 June 1993.

57. M. Seligmann, "The Concorde Trial: First Results," Session WS-B24-5, IX International Conference on AIDS, Berlin, 10 June 1993; M. Seligmann, "Report of the Coordinating Committee of the Concorde Trial," Session OP-01-2, IX International Conference on AIDS, Berlin, 8 June 1993.

58. Delaney's comments are from a press conference and a Project Inform "Town Meeting," both held on June 9, 1993 (author's field notes).

59. M. A. Fischl, "Combination Therapy: Now and the Future" (paper presented at Harvard AIDS Institute—AIDS Clinical Research Symposium, Berlin, 8 June 1993).

60. From the press release "Effectiveness of AZT/ddC Combination Depends on Pretreatment Immune Cell Count," News from NIAID, 7 June 1993.

61. From the press release "The Effectiveness of AZT Alone, ddC Alone or AZT/ddC Combination Is Similar Overall for Patients with Advanced HIV Disease," News from NIAID, 10 June 1993. My thanks to Jon Cohen, AIDS reporter for Science, for this anecdote.

62. M. Fischl, "The Safety and Efficacy of Zidovudine (ZDV) and Zalcitabine (ddC) or ddC Alone versus ZDV," Session WS-B25-1, IX International Conference on AIDS, Berlin, 10 June 1993.

63. Author's field notes, Session WS-B25-1; Robert Massa, "Two Steps Back," Village Voice, 22 June 1993.

64. "When to Start Antiretroviral Treatment: Research Issues," Session ME-13, IX International Conference on AIDS," Berlin, 10 June 1993. Quotes that follow are from author's field notes.

65. As Montini and Slobin noted in a study of NIH Consensus Development Conferences that try to create "standards of care," practitioners and researchers confront different work environments and pressures, and their expectations are shaped accordingly. Typically, practicing physicians have a "desire for certainty," while researchers (even those who also see patients) may have a much higher "tolerance for uncertainty." See Theresa Montini and Kathleen Slobin, "Tensions Between Good Science and Good Practice: Lagging Behind and Leapfrogging Ahead Along the Cancer Continuum," Research in the Sociology of Health Care 9 (1991): 127-140, quote from 130. On the professional socialization that teaches doctors to manage uncertainty, see Renée C. Fox, "Training for Uncertainty," in Phil Brown, ed., Perspectives in Medical Sociology (Prospect Heights, Ill.: Waveland Press, 1992), 450-459. For a dissenting view arguing that doctors are trained to suppress and deny uncertainty, see Jay Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984), chapter 7.

66. Lawrence K. Altman, "Experts Change Guides to Using Drugs for H.I.V.," New York Times, 27 June 1993, A-1, A-10.

67. Lawrence K. Altman, "The Doctor's World: Government Panel on H.I.V. Finds the Prospect for Treatment Bleak," New York Times, 29 June 1993, C-3.

68. David A. Cooper et al., "Zidovudine in Persons with Asymptomatic HIV Infection and CD4 + Cell Counts Greater than 400 Per Cubic Millimeter," New England Journal of Medicine 329 (29 July 1993): 297-303.

69. John B. Bartlett, "Zidovudine Now or Later?" New England Journal of Medicine 329 (29 July 1993): 351-352 (editorial).

70. Natalie Angier, "Australian Study Says AZT Slows Progression toward Full-Blown AIDS," New York Times, 29 July 1993, A-9.

71. Paul Volberding, interview by author, tape recording, San Francisco, 7 July 1994.

72. P. A. Volberding et al., "The Duration of Zidovudine Benefit in Persons with Asymptomatic HIV Infection: Prolonged Evaluation of Protocol 019 of the AIDS Clinical Trials Group," Journal of the American Medical Association 272 (10 August 1994): 437-442.

73. Centers for Disease Control and Prevention, "Zidovudine for the Prevention of HIV Transmission from Mother to Infant," Journal of the American Medical Association 271 (25 May 1994): 1567-1570.

74. Rae Trewartha, "AZT, Perinatal Transmission: Unanswered Questions," AIDS Treatment News, 16 September 1994.

75. Ronald Bayer, "Ethical Challenges Posed by Zidovudine Treatment to Reduce Vertical Transmission of HIV," New England Journal of Medicine 331 (3 November 1994): 1223-1225 (editorial).

76. Concorde Coordinating Committee, "Concorde: MRC/ANRS Randomised Double-Blind Controlled Trial of Immediate and Deferred Zidovudine in Symptom-Free HIV Infection," Lancet 343 (9 April 1994): 871-881.

77. Quoted in "Burroughs Wellcome Responds to Publication of Concorde Study," New York Native, 2 May 1994, 12.

78. Paul Cotton, "Use of Antiretroviral Drugs in HIV Disease Declines Following Preliminary Results from Concorde Trial," Journal of the American Medical Association 271 (16 February 1994): 487.

79. Deborah Cotton, interview by author, tape recording, Boston, 25 October 1994.

80. Douglas Richman, interview by author, tape recording, San Diego, 1 June 1994.

81. Margaret A. Fischl et al., "Combination and Monotherapy with Zidovudine and Zalcitabine in Patients with Advanced HIV Disease," Annals of Internal Medicine 122 (1 January 1995), 24-32, esp. 25.

82. Stephen Lagakos, interview by author, tape recording, Boston, 27 October 1994. In the published report, the authors themselves noted that "caution should be used when interpreting subgroup analysis because subgroup analyses may produce spurious results." The researchers supplemented the subgroup analysis with a "trend analysis, which used pretreatment CD4 cell counts as a continuous variable" and which, therefore, did not "suffer from the same limitations" (Fischl et al., "Combination and Monotherapy with Zidovudine and Zalcitabine," 27, 30).

83. Susan Ellenberg, interview by author, tape recording, Rockville, Md., 25 April 1994.

84. Fischl et al., "Combination and Monotherapy with Zidovudine and Zalcitabine," 30.

85. Lagakos, interview.

86. Martin Hirsch, interview by author, tape recording, Boston, 25 October 1994.

87. Ibid.

88. Fischl et al., "Combination and Monotherapy with Zidovudine and Zalcitabine," 30.

89. Richman, interview.

90. Mark Harrington, "The Crisis in Clinical AIDS Research" (Treatment Action Group, New York, 1 December 1993, photocopy), 13-14, 16.

91. See Evelleen Richards, Vitamin C and Cancer: Medicine or Politics? (New York: St. Martin's, 1991).

92. Edward A. Wyatt, "Rushing to Judgment," Barron's, 15 August 1994, 23.

93. Christine Gorman, "Let's Not Be Too Hasty: Activists Who Once Clamored for Speedier Approval of AIDS Drugs Now Favor a More Deliberate Approach," Time, 19 September 1994, 71.

94. John S. James, "BARRON'S: 'Do We Have Too Many Drugs for AIDS?'" AIDS Treatment News, 19 August 1994.

95. David Feigal, interview by author, tape recording, Rockville, Md., 1 November 1994.

96. Kessler has provided an overview of his position on rapid approval of AIDS drugs in: David A. Kessler and Karyn L. Feiden, "Faster Evaluation of Vital Drugs," Scientific American, March 1995, 48-54.

97. Derek Link, interview by author, tape recording, New York City, 28 April 1994.

98. Gina Kolata, "Debate Reopens on AIDS Drug Access," New York Times, 12 September 1994, A-16.

99. Anthony Fauci, interview by author, tape recording, Bethesda, Md., 31 October 1994.

100. David D. Ho et al., "Rapid Turnover of Plasma Virions and CD4 Lymphocytes in HIV-1 Infection," Nature 373 (12 January 1995): 123-126; Xiping Wei et al., "Viral Dynamics in Human Immunodeficiency Virus Type 1 Infection," Nature 373 (12 January 1995): 117-122.

101. Gina Kolata, "New AIDS Finding on Why Drugs Fail," New York Times, 12 January 1995, A-1.

102. Lagakos, interview.

103. "With Good Intentions, Overzealous Researchers May Be Setting the Stage for Yet Another Colossal Failure," TAGline, January 1995, 5.

104. "With Its First Protease Trial Completed, Roche Races to FDA with Lukewarm Results, Activists Cry 'Foul,'" TAGline, July 1994, 1.

105. Robert Trautman, "AIDS Group Urges Wider Use of Experimental Drug," Reuters, 27 October 1994.

106. John S. James, "'Access' and 'Answers': FDA Antiviral Advisory Meeting, September 12-13," AIDS Treatment News, 16 September 1994.

107. G'dali Braverman, interview by author, tape recording, San Francisco, 17 December 1993.

108. Brenda Lein, interview by author, tape recording, San Francisco, 18 December 1993.

109. Peter Staley, "The Responsibilities of Empowerment" (paper presented at "Until There Is a Cure, VI" Conference, Palmetto, Fla., 2 December 1994, photocopy). This was the keynote address, distributed by Treatment Action Group in New York.

110. Harrington, "Crisis in Clinical AIDS Research," 11-12.

111. David Barr, interview by author, tape recording, New York City, 28 April 1994.

112. Tim Kingston, "Coppola's Kids: Leading AIDS Researchers Gather at Project Inform Think Tank in Napa," San Francisco Bay Times, 28 January 1993, 6-7.

113. Gregg Gonsalves, "Basic Research on HIV Infection: A Report from the Front" (Treatment Action Group, New York, 1993, photocopy), 1-2.

114. Ibid., 4, 5.

115. Quoted in Simon Watney, "Dutch Dating," QW, 9 August 1992, 44, 45, 67.

116. Donald Abrams, interview by author, tape recording, San Francisco, 16 December 1993.

117. Gina Kolata, "Scientists Say U.S. Research on AIDS Needs Redirection," New York Times, 12 May 1994, A-12.

118. Bernard N. Fields, "AIDS: Time to Turn to Basic Science," Nature 369 (12 May 1994): 95-96.

119. Kolata, "Scientists Say U.S. Research on AIDS Needs Redirection." On William Paul's appointment, see Jon Cohen, "New AIDS Chief Takes Charge," Science 263 (11 March 1994): 1364-1366.

120. Andrew Pollack, "Meeting Lays Bare the Abyss between AIDS and Its Cure," New York Times, 12 August 1994, A-1.

121. Julio S. G. Montaner and Martin T. Schechter, "Time for Realism over HIV Infection," Lancet 344 (20 August 1994): 535.

122. Andrew Pollack, "U.S. Official to Shift Funds toward Basic AIDS Research," New York Times, 10 August 1994, A-6.

123. The transcript of this presentation was published in William E. Paul, "A Turning Point in AIDS Research: Building on Firmer Foundations," Vital Speeches 60 (September 1994): 709-712.

124. Martin Delaney, "The Evolution of Community-Based Research," Session PS-02-3, IX International Conference on AIDS, Berlin, 8 June 1993.

125. Fauci, interview.

126. Link, interview.

127. Lein, interview.

128. Robert Gallo, interview by author, tape recording, Bethesda, Md., 3 November 1994.

129. The term "pollination" was suggested to me by Michael Botkin, interview by author, tape recording, San Francisco, 16 December 1993.

130. Gallo, interview.

131. Link, interview.

132. Ho, Neumann et al., "Rapid Turnover of Plasma Virions"; Wei, Ghosh et al., "Viral Dynamics." On the persistence of imagery of warfare in discourses about the immune system, see Emily Martin, Flexible Bodies: Tracking Immunity in American Culture—From the Days of Polio to the Age of AIDS (Boston: Beacon Press, 1994).

133. David D. Ho, "Time to Hit HIV, Early and Hard," New England Journal of Medicine 333 (17 August 1995): 450-451.

134. Marlene Cimons, "New Strategies Fuel Optimism in AIDS Fight," Los Angeles Times, 20 February 1995, A-1.

135. John S. James, "3TC Plus AZT: Important Treatment Advance?" AIDS Treatment News, 12 December 1994.

136. "Like the Wings of Icarus, Treatment Hype Sweeps Its Prey Upward to the Heavens, Then Plucks Them Down Into Icey [sic] Waters," TAGline, February 1995, 1, 3, 5.

137. Stephen D. Moore, "Wellcome Advises Shareholders to Accept $15.15 Billion Takeover Offer from Glaxo," Wall Street Journal, 8 March 1995, A-3.

138. Rick Loftus and David Gold, "Protease Inhibitors: Where Are They Now?" GMHC Treatment Issues, January 1995.

139. "AIDS Activists Seek Speedy Access to Protease Drugs," Nature 374 (2 March 1995): 4.

140. Diane Naughton, "Drug Lotteries Raise Questions: Some Experts Say System of Distribution May Be Unfair," Washington Post, 26 September 1995, Z-14.

141. Loftus and Gold, "Protease Inhibitors."

142. Claire O'Brien, "HIV Integrase Structure Catalyzes Drug Search," Science 266 (23 December 1994): 1946.

143. Warren E. Leary, "Experts Press for Fast Action on AIDS Drug," New York Times, 8 November 1995.

144. Philip J. Hilts, "Acting with Unusual Speed, Drug Agency Approves New AIDS Treatment," New York Times, 2 March 1996, 7; Philip J. Hilts, "With Record Speed, F.D.A. Approves a New AIDS Drug," New York Times, 15 March 1996, A-9.

145. Lawrence K. Altman, "A New AIDS Drug Yielding Optimism as Well as Caution," New York Times, 2 February 1996, A-1.

146. Daniel Hoth, interview by author, tape recording, Foster City, Calif., 11 July and 19 October 1994.

147. Jon Cohen, "Bringing AZT to Poor Countries," Science 269 (4 August 1995): 624-625.

148. Mark Barnes, "Treatment's High Cost," New York Times, 28 November 1995, A-14 (letter to the editor).

149. Richard Preston, The Hot Zone (New York: Anchor Books, 1994). For a more sober treatment, see Laurie Garrett, The Coming Plague: Newly Emerging Diseases in a World Out of Balance (New York: Farrar, Straus and Giroux, 1994).

150. Lawrence K. Altman, "AIDS Is Now the Leading Killer of Americans from 25 to 44," New York Times, 31 January 1995, B-8; "First 500,000 AIDS Cases—United States, 1995," Morbidity and Mortality Weekly Report 44 (24 November 1995): 849-853.

151. See Elizabeth Fee and Daniel M. Fox, eds., AIDS: The Making of a Chronic Disease (Berkeley: Univ. of California Press, 1992).

152. See H. P. Kitschelt, "Political Opportunity Structures and Political Protest: Anti-Nuclear Movements in Four Democracies," British Journal of Political Science 16 (January 1986): 57-85.

153. "Clinton Administration Names AIDS Panel to Speed Drug Search," New York Times, 7 February 1994, A-9.

154. Hoth, interview.

155. Jon Cohen, "AIDS Task Force Fizzles Out," Science 271 (26 January 1996): 438.

156. "15 Drug Firms Announce Alliance on AIDS Research," Los Angeles Times, 20 April 1993, D-2.

157. David R. Olmos, "The Cost of a Cure," Los Angeles Times, 2 March 1994, B-5.

158. Garance Franke-Ruta, interview by author, tape recording, New York City, 29 April 1994.

159. Braverman, interview.

160. Moisés Agosto, interview by author, tape recording, New York City, 26 April 1994.

161. Link, interview.

162. See Eric L. Hirsch, "Sacrifice for the Cause: Group Processes, Recruitment, and Commitment in a Student Social Movement," American Sociological Review 55 (April 1990): 243-254.

163. Sarah Schulman, My American History: Lesbian and Gay Life During the Reagan/Bush Years (New York: Routledge, 1994), 12.

164. Mark Harrington, interview by author, tape recording, New York City, 29 April 1994.

165. See Scott A. Hunt, Robert D. Benford, and David A. Snow, "Identity Fields: Framing Processes and the Social Construction of Movement Identities," in New Social Movements: From Ideology to Identity, ed. Enrique Laraña, Hank Johnston, and Joseph R. Gusfield (Philadelphia: Temple Univ. Press, 1994), 185-208.

166. Chris Bull, "No News Is Bad News," The Advocate, 13 July 1993, 24-27.

167. Franke-Ruta, interview.

168. Kolata, "Scientists Say U.S. Research on AIDS Needs Redirection."

Conclusion Credible Knowledge Hierarchies of Expertise, and the Politics of Participation in Biomedicine

1. As Bourdieu has argued more generally, "the question of the limits of the field is a very difficult one, if only because it is always a stake in the field itself and therefore admits of no a priori answer. ... Thus the boundaries of the field can only be determined by an empirical investigation" (Pierre Bourdieu and Loïc J. D. Wacquant, An Invitation to Reflexive Sociology [Chicago: Univ. of Chicago Press, 1992], 100 [emphasis in the original]).

2. Exceptions are discussed in the introduction.

3. See Steven Shapin and Simon Schaffer, Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life (Princeton, N.J.: Princeton Univ. Press, 1985); Harry Collins, Changing Order: Replication and Induction in Scientific Practice, 2d ed. (Chicago: Univ. of Chicago Press, 1992); Harry Collins and Trevor Pinch, The Golem: What Everyone Should Know about Science (Cambridge: Cambridge Univ. Press, 1993). For an analysis of such debates in the interpretation of clinical trials, see Evelleen Richards, Vitamin C and Cancer: Medicine or Politics? (New York: St. Martin's, 1991).

4. Douglas Richman, interview by author, tape recording, San Diego, 1 June 1994.

5. Rae Goodell, "The Role of the Mass Media in Scientific Controversies," in Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science and Technology, ed. H. Tristram Engelhardt Jr. and Arthur L. Caplan (Cambridge, England: Cambridge Univ. Press, 1987), 585-597, quote from 590. This echoes Anthony Fauci's criticism of media coverage of Peter Duesberg (see chapter 4).

6. Todd Gitlin, The Whole World Is Watching: Mass Media in the Makingand Unmaking of the New Left (Berkeley: Univ. of California Press, 1980), chapter 5.

7. See Alvin Gouldner's discussion of the "culture of critical discourse" in The Future of Intellectuals and the Rise of the New Class (New York: Oxford Univ. Press, 1979), 27-47. For a similar argument about researchers' felt need to take AIDS activists' scientific arguments seriously, see William Francis Patrick Crowley III, "Gaining Access: The Politics of AIDS Clinical Drug Trials in Boston" (undergraduate thesis, Harvard College, 1991), 76-77.

8. On obligatory passage points in science, see Bruno Latour, Science in Action (Cambridge, Mass.: Harvard Univ. Press, 1987).

9. For an analysis of how debates within expert circles can expand outward to incorporate activists, see Brian Balogh, Chain Reaction: Expert Debate and Public Participation in American Commercial Nuclear Power, 1945-1975 (Cambridge, England: Cambridge Univ. Press, 1991).

10. Latour, Science in Action.

11. Cf. Bourdieu and Wacquant, Invitation to Reflexive Sociology, 99.

12. Donna J. Haraway, Simians, Cyborgs, and Women: The Reinvention of Nature (New York: Routledge, 1991), chapter 9.

13. Giovanna Di Chiro, "Defining Environmental Justice: Women's Voices and Grassroots Politics," Socialist Review, October-December 1992, 93-130, esp. 120.

14. Anthony Fauci, interview by author, tape recording, Bethesda, Md., 31 October 1994.

15. Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992), 461.

16. Robert Gallo, interview by author, tape recording, Md., 3 November 1994.

17. Douglas Richman, interview by author, tape recording, San Diego, 1 June 1994.

18. John Phair, interview by author, tape recording, Chicago, 15 November 1994.

19. Andrew Abbott, The System of Professions: An Essay on the Division of Expert Labor (Chicago: Univ. of Chicago Press, 1988), 75-76.

20. Gina Kolata, "F.D.A. Urges Special Access to Rejected Alzheimer Drug," New York Times, 23 March 1991, A-7; David Feigal, interview by author, tape recording, Rockville, Md., 1 November 1994.

21. Peter S. Arno and Karyn L. Feiden, Against the Odds: The Story of AIDS Drug Development, Politics and Profits (New York: HarperCollins, 1992); Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992).

22. Figures from a handout prepared by Division of AIDS, NIAID, labeled "Adult ACTG Accrual." In general, subject populations in community-based research initiatives have been more demographically diverse than those in ACTG trials.

23. Minutes of the ACTG Executive Committee meeting (Joint Session with the Principal Investigators), Division of AIDS, NIAID, 7 March 1989; Minutes of the ACTG Executive Committee Meeting, Division of AIDS, NIAID, 6 October 1988.

24. Philip J. Hilts, "F.D.A. Ends Ban on Women in Drug Testing," New York Times, 25 March 1993, B-8.

25. Fauci, interview.

26. Susan Ellenberg, interview by author, tape recording, Rockville, Md., 25 April 1994.

27. Donald Abrams, interview by author, tape recording, San Francisco, 16 December 1993.

28. Paula Treichler has made a similar point about community-based AIDS research projects. See "How to Have Theory in an Epidemic: The Evolution of AIDS Treatment Activism," in Technoculture, ed. Constance Penley and Andrew Ross (Minneapolis: Univ. of Minnesota Press, 1991), 57-106, esp. 79.

29. Michelle Roland, interview by author, tape recording, Davis, Calif., 18 December 1993.

30. Phair, interview.

31. For the terminology of "lay expert" and "lay lay" activists, I am indebted to Gilbert Elbaz, "The Sociology of AIDS Activism, the Case of ACT UP/New York, 1987-1992" (Ph.D. diss., City University of New York, 1992), 488.

32. Roland, interview.

33. Some activists who criticize groups like TAG, such as Maxine Wolfe of the Women's Caucus of ACT UP/New York (interview by author, tape recording, New York City, 27 April 1994), do take a more radical stance in objecting to the randomized clinical trial. But this is a minority position.

34. Richards, Vitamin C and Cancer, 204, 232-234, 5.

35. Quoted in Paul Cotton, "HIV Surrogate Markers Weighed," Journal of the American Medical Association 265 (20 March 1991): 1357, 1361, 1362, quote from 1362.

36. Mark Harrington, "The Crisis in Clinical AIDS Research" (Treatment Action Group, New York, 1 December 1993, photocopy), 7.

37. Conveying to the public a deeper sense of the uncertainty endemic to the process of scientific investigation is similar to the mission expressed by Collins and Pinch in Golem. See also Sheila Jasanoff, The Fifth Branch: Science Advisers as Policymakers (Cambridge, Mass.: Harvard Univ. Press, 1990).

38. "Public Hearings at FDA Juxtapose Old Cries of Access with Those of Integrity, Accountability," TAGline, October 1994, 2.

39. Brian Wynne, "Unruly Technology: Practical Rules, Impractical Discourses and Public Understanding," Social Studies of Science 18 (February 1988): 147-167; Collins and Pinch, Golem.

40. Alberto Melucci, Nomads of the Present: Social Movements and Individual Needs in Contemporary Society (Philadelphia: Temple Univ. Press, 1989), 73-76.

41. Thomas Merigan, interview by author, tape recording, Palo Alto, Calif., 29 June 1994.

42. Gina Kolata, "Their Treatment, Their Lives, Their Decisions," New York Times Magazine, 24 April 1994, 66, 100, 105.

43. Andrew Feenberg, "On Being a Human Subject: Interest and Obligation in the Experimental Treatment of Incurable Disease," The Philosophical Forum 23 (spring 1992): 213-230; Carol Levine, Nancy Neveloff Dubler, and Robert J. Levine, "Building a New Consensus: Ethical Principles and Policies for Clinical Research on HIV/AIDS," AIDS Patient Care, April 1992, 67-85.

44. Robert M. Wachter, The Fragile Coalition: Scientists, Activists, and AIDS (New York: St. Martin's, 1991), xiii.

45. Roland, interview.

46. Rebecca Smith, interview by author, tape recording, Providence, R.I., 26 October 1994.

47. See Mark A. Chesler, "Mobilizing Consumer Activism in Health Care: The Role of Self-Help Groups," Research in Social Movements, Conflicts and Change 13 (1991): 275-305; Miriam J. Stewart, "Expanding Theoretical Conceptualizations of Self-Help Groups," Social Science and Medicine 31 (May 1990): 1057-1066; and the special issue of the American Journal of Community Psychology 19 (October 1991).

48. David S. Meyer and Nancy Whittier, "Social Movement Spillover," Social Problems 41 (May 1994): 277-298; David A. Snow and Robert D. Benford, "Master Frames and Cycles of Protest," in Frontiers in Social Movement Theory, ed. Aldon D. Morris and Carol McClurg Mueller (New Haven: Yale Univ. Press, 1992), 133-155.

49. Marian Uhlman, "Revolt by Patients Threatens Test of Lou Gehrig Drug," Philadelphia Inquirer, 21 March 1994, A-1; Tim Kingston, "The 'White Rats' Rebel: Chronic Fatigue Patients Sue Drug Manufacturer for Breaking Contract to Supply Promising CFIDS Drug," San Francisco Bay Times, 7 November 1991, 8, 44; Marcia Barinaga, "Furor at Lyme Disease Conference," Science 256 (5 June 1992): 1384-1385; "Marching for Alzheimer's," Wall Street Journal, 24 September 1992 (editorial); Lisa W. Foderaro, "Mentally Ill Gaining New Rights with the Ill as Their Own Lobby," New York Times, 14 October 1995, A-1; Christina Smith, "Living with Environmental Illness," San Francisco Bay Times, December 1990.

50. See Robert M. Wachter, "AIDS, Activism, and the Politics of Health," New England Journal of Medicine 326 (9 January 1992): 128-133.

51. "MD Telethon Boycott Urged," San Francisco Examiner, 2 September 1991, B-1.

52. Malcolm Gladwell, "Beyond HIV: The Legacies of Health Activism," Washington Post, 15 October 1992, A-29.

53. Susan Ferraro, "The Anguished Politics of Breast Cancer," New York Times Magazine, 15 August 1993, 26. See also Jackie Winnow, "Lesbians Evolving Health Care: Cancer and AIDS," Feminist Review, summer 1992, 68-77; Judy Brady, ed., 1 in 3: Women with Cancer Confront an Epidemic (Pittsburgh and San Francisco: Cleis Press, 1991); Alisa Solomon, "The Politics of Breast Cancer," Camera Obscura 28 (January 1992): 157-177.

54. Ferraro, "Anguished Politics of Breast Cancer," 27. See also Gina Kolata, "Weighing Spending on Breast Cancer Research," New York Times, 20 October 1993, B-9.

55. Jane Gross, "Turning Disease into Political Cause: First AIDS, and Now Breast Cancer," New York Times, 7 January 1991, A-12. See also Lisa M. Krieger, "Breast Cancer Activists Look to AIDS Forces," San Francisco Examiner, 5 May 1991, A-1, A-16.

56. Gross, "Turning Disease into Political Cause."

57. "ACT UP Fights for Breast Cancer Drug," AIDS Treatment News, 23 December 1994.

58. Bruce Mirken, "Quiet Collaboration between AIDS and Breast Cancer Activists Is Beginning to Pay Off," San Francisco Bay Times, 10 March 1994, 8-9.

59. Brenda Lein, interview by author, tape recording, San Francisco, 18-19 December 1993.

60. Lein, interview; Mirken, "Quiet Collaboration."

61. Mark Harrington, interview by author, tape recording, New York City, 29 April 1994.

62. Richard E. Sclove, Democracy and Technology (New York: Guilford, 1995), 26-27.

63. Sheldon Krimsky, "Beyond Technocracy: New Routes for Citizen Involvement in Social Risk Assessment," in Citizen Participation in Science Policy, ed. James C. Petersen (Amherst: Univ. of Massachusetts Press, 1984), 43-61; James C. Petersen, "Citizen Participation in Science Policy," in Citizen Participation in Science Policy (above), 1-17; Loet Leydesdorff and Peter Van den Besselaar, "What We Have Learned from the Amsterdam Science Shop," in The Social Direction of the Public Sciences, ed. Stuart Blume et al. (Dordrecht, Holland: D. Reidel, 1987), 135-160. For general perspectives on the democratization of science, technology, and research practices, see John Gaventa, "The Powerful, the Powerless, and the Experts: Knowledge Struggles in an Information Age," in Voices of Change: Participatory Research in the United States and Canada, ed. Peter Park et al. (Westport, Conn.: Bergin & Garvey, 1993), 21-40; Andrew Feenberg, Critical Theory of Technology (New York: Oxford Univ. Press, 1991); Joseph Turner, "Democratizing Science: A Humble Proposal," Science, Technology & Human Values 15 (summer 1990): 336-359; Michael Goldhaber, Reinventing Technology: Policies for Democratic Values (New York: Routledge, 1986); Brian Martin, "The Goal of Self-Managed Science: Implications for Action," Radical Science Journal 10 (1980): 3-16.

64. See Robert Kleidman, "Volunteer Activism and Professionalism in Social Movement Organizations," Social Problems 41 (May 1994): 257-276; Barbara Epstein, Political Protest and Cultural Revolution: Nonviolent Direct Action in the 1970s and 1980s (Berkeley: Univ. of California Press, 1991), 271; Ronald J. Troyer, "From Prohibition to Regulation: Comparing Two Antismoking Movements," Research in Social Movements, Conflicts and Change 7 (1984): 53-69.

65. Robert W. Rycroft, "Environmentalism and Science: Politics and the Pursuit of Knowledge," Knowledge: Creation, Diffusion, Utilization 13 (December 1991): 150-169, esp. 163-164.

66. Franke-Ruta, interview.

67. Moisés Agosto, interview by author, tape recording, New York City, 26 April 1994.

68. A fully adequate consideration of these issues would include an analysis of relations of power, knowledge, and expertise in a global context—for example, an examination of the ways in which, at times, "the concerns of the developing world pale beside the new alliance of medical smocks and ACT UP t-shirts" (Dennis Altman, Power and Community: Organizational and Cultural Responses to AIDS [London: Taylor & Francis, 1994], 133).

69. Gregg Gonsalves and Mark Harrington, "AIDS Research at the NIH: A Critical Review. Part I: Summary" (Treatment Action Group, New York, 1992, photocopy), 1-2.

Methodological Appendix

1. See Eugene Garfield, "Which Medical Journals Have the Greatest Impact?" Annals of Internal Medicine 105 (August 1986): 313-320.

2. David Bloor, Knowledge and Social Imagery, 2d ed. (Chicago: Univ. of Chicago Press, 1991), 7, 175-179.

3. Pam Scott, Evelleen Richards, and Brian Martin, "Captives of Controversy: The Myth of the Neutral Social Researcher in Contemporary Scientific Controversies," Science, Technology, & Human Values 15 (fall 1990): 475.

4. For debates about "symmetry" and "neutrality," see Scott, Richards, and Martin, "Captives of Controversy"; H. M. Collins, "Captives and Victims: Comments on Scott, Richards, and Martin," Science, Technology, & Human Values 16 (spring 1991): 249-251.

5. Michael Foucault, The Order of Things: An Archaeology of the Human Sciences (New York: Vintage Books, 1973); Michel Foucault, The Archaeology of Knowledge (New York: Pantheon, 1972).

6. Michel Foucault, Power/Knowledge (New York: Pantheon, 1980), 83-85.

7. On "situated knowledges," see Donna J. Haraway, Simians, Cyborgs, and Women: The Reinvention of Nature (New York: Routledge, 1991), chapter 9.

8. For general procedures in performing content analysis, see Klaus Krippendorff, Content Analysis: An Introduction to Its Methodology (Beverly Hills, Calif.: Sage, 1980); Richard W. Budd, Robert K. Thorp, and Lewis Donohew, Content Analysis of Communication (New York: Macmillan, 1967).

9. Eugene Garfield, ed., Science Citation Index Journal Citation Reports (Philadelphia: Institute for Scientific Information), 1985, 1986, 1987.

10. Other specialty journals, such as the Journal of Biological Chemistry and the Journal of the American Chemical Society also ranked high on this list. But a check of the articles citing Gallo's paper revealed that practically no authors who wrote for these journals cited Gallo. Therefore, these journals were not included.

11. Other medical journals, such as the WHO Technical Report Series, also ranked high on this list. But again, authors who wrote for these more specialized publications were not among those citing Gallo's paper. On medical publications, see also Garfield, "Which Medical Journals Have the Greatest Impact?"

12. See C. Self, W. Filardo, and W. Lancaster, "Acquired Immunodeficiency Syndrome (AIDS) and the Epidemic Growth of Its Literature," Scientometrics 17 (July 1989): 49-60; I. N. Sengupta and Lalita Kumari, "Bibliometric Analysis of AIDS Literature," Scientometrics 20 (January 1991): 297-315.

13. I consulted the 1987 issue because the SCI does not report some citations until the year after their publication date.

14. Garfield, "Which Medical Journals Have the Greatest Impact?" 313, 315.

15. There were thirty-four such articles in the Annals of Internal Medicine, twenty-seven in JAMA, thirty-one in Lancet, nineteen in Nature, thirty-four in the New England Journal, thirty-three in the Proceedings, and sixty-six in Science.

16. I looked at the citing sentence only, unless that sentence did not permit a determination. In that case, I looked at the three preceding and three subsequent sentences to see if they provided additional context.

17. My original coding was more elaborate, differentiating between Gallo and the other coauthors and examining whether or not Gallo was the first author. In the end, there proved to be too few cases in most of these categories, so I combined the data, to distinguish simply between articles with an author from the Gallo group and articles without such an author.

18. A comparison of the four medical journals as an aggregate versus the three general science journals as an aggregate did not reveal any interesting differences. Therefore, I do not report these data.


Notes
 

Preferred Citation: Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley:  University of California Press,  c1996 1996. http://ark.cdlib.org/ark:/13030/ft1s20045x/