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.