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]). [BACK]

2. Exceptions are discussed in the introduction. [BACK]

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). [BACK]

4. Douglas Richman, interview by author, tape recording, San Diego, 1 June 1994. [BACK]

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). [BACK]

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. [BACK]

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. [BACK]

8. On obligatory passage points in science, see Bruno Latour, Science in Action (Cambridge, Mass.: Harvard Univ. Press, 1987). [BACK]

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). [BACK]

10. Latour, Science in Action. [BACK]

11. Cf. Bourdieu and Wacquant, Invitation to Reflexive Sociology, 99. [BACK]

12. Donna J. Haraway, Simians, Cyborgs, and Women: The Reinvention of Nature (New York: Routledge, 1991), chapter 9. [BACK]

13. Giovanna Di Chiro, "Defining Environmental Justice: Women's Voices and Grassroots Politics," Socialist Review, October-December 1992, 93-130, esp. 120. [BACK]

14. Anthony Fauci, interview by author, tape recording, Bethesda, Md., 31 October 1994. [BACK]

15. Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992), 461. [BACK]

16. Robert Gallo, interview by author, tape recording, Md., 3 November 1994. [BACK]

17. Douglas Richman, interview by author, tape recording, San Diego, 1 June 1994. [BACK]

18. John Phair, interview by author, tape recording, Chicago, 15 November 1994. [BACK]

19. Andrew Abbott, The System of Professions: An Essay on the Division of Expert Labor (Chicago: Univ. of Chicago Press, 1988), 75-76. [BACK]

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. [BACK]

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). [BACK]

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. [BACK]

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. [BACK]

24. Philip J. Hilts, "F.D.A. Ends Ban on Women in Drug Testing," New York Times, 25 March 1993, B-8. [BACK]

25. Fauci, interview. [BACK]

26. Susan Ellenberg, interview by author, tape recording, Rockville, Md., 25 April 1994. [BACK]

27. Donald Abrams, interview by author, tape recording, San Francisco, 16 December 1993. [BACK]

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. [BACK]

29. Michelle Roland, interview by author, tape recording, Davis, Calif., 18 December 1993. [BACK]

30. Phair, interview. [BACK]

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. [BACK]

32. Roland, interview. [BACK]

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. [BACK]

34. Richards, Vitamin C and Cancer, 204, 232-234, 5. [BACK]

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. [BACK]

36. Mark Harrington, "The Crisis in Clinical AIDS Research" (Treatment Action Group, New York, 1 December 1993, photocopy), 7. [BACK]

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). [BACK]

38. "Public Hearings at FDA Juxtapose Old Cries of Access with Those of Integrity, Accountability," TAGline, October 1994, 2. [BACK]

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. [BACK]

40. Alberto Melucci, Nomads of the Present: Social Movements and Individual Needs in Contemporary Society (Philadelphia: Temple Univ. Press, 1989), 73-76. [BACK]

41. Thomas Merigan, interview by author, tape recording, Palo Alto, Calif., 29 June 1994. [BACK]

42. Gina Kolata, "Their Treatment, Their Lives, Their Decisions," New York Times Magazine, 24 April 1994, 66, 100, 105. [BACK]

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. [BACK]

44. Robert M. Wachter, The Fragile Coalition: Scientists, Activists, and AIDS (New York: St. Martin's, 1991), xiii. [BACK]

45. Roland, interview. [BACK]

46. Rebecca Smith, interview by author, tape recording, Providence, R.I., 26 October 1994. [BACK]

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). [BACK]

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. [BACK]

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. [BACK]

50. See Robert M. Wachter, "AIDS, Activism, and the Politics of Health," New England Journal of Medicine 326 (9 January 1992): 128-133. [BACK]

51. "MD Telethon Boycott Urged," San Francisco Examiner, 2 September 1991, B-1. [BACK]

52. Malcolm Gladwell, "Beyond HIV: The Legacies of Health Activism," Washington Post, 15 October 1992, A-29. [BACK]

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. [BACK]

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. [BACK]

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. [BACK]

56. Gross, "Turning Disease into Political Cause." [BACK]

57. "ACT UP Fights for Breast Cancer Drug," AIDS Treatment News, 23 December 1994. [BACK]

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. [BACK]

59. Brenda Lein, interview by author, tape recording, San Francisco, 18-19 December 1993. [BACK]

60. Lein, interview; Mirken, "Quiet Collaboration." [BACK]

61. Mark Harrington, interview by author, tape recording, New York City, 29 April 1994. [BACK]

62. Richard E. Sclove, Democracy and Technology (New York: Guilford, 1995), 26-27. [BACK]

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. [BACK]

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. [BACK]

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. [BACK]

66. Franke-Ruta, interview. [BACK]

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). [BACK]

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. [BACK]