Hostname: page-component-cd9895bd7-dzt6s Total loading time: 0 Render date: 2024-12-23T14:33:31.620Z Has data issue: false hasContentIssue false
  • English
  • Français

Dollars, disease, and democracy: Has the Director's Council of Public Representatives improved the National Institutes of Health?

Published online by Cambridge University Press:  17 May 2016

Eileen Burgin
Eileen Burgin*
Affiliation:
Department of Political Science The University of Vermont The Old Mill Burlington, VT 05405 [email protected]
Get access

Abstract

The National Institutes of Health (NIH) Director's Council of Public Representatives (COPR) was established in 1998 as an advisory council to the NIH director and NIH's only wholly “public” advisory group. COPR's stated objective was, and remains, to strengthen and formalize public input into funding-allocation decisions for biomedical research by the NIH, the single largest sponsor of such research. Yet, to date, COPR's work and effectiveness have not been carefully explored. In beginning to fill this void, my goal is to contribute to the understanding of public involvement in the distribution of health research dollars. More specifically, I show that COPR has failed to promote public participation in the apportionment of biomedical research funds, but that it has been beneficially effective in some respects and likely could — and arguably should — be made more effective. The essay draws on interviews I conducted with former COPR members and discussions I initiated with executive branch employees familiar with COPR's mission, opportunities, impediments, and performance.

Type
Research Article
Information
Politics and the Life Sciences , Volume 24 , Issue 1-2 , September 2005 , pp. 43 - 63
Copyright
Copyright © Association for Politics and the Life Sciences 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1. Council of Public Representatives, Enhancing Public Input and Transparency in the National Institutes of Health Research Priority-Setting Process, May 2004.Google Scholar
2. Cobb, Roger and Elder, Charles, Participation in American Politics: The Dynamics of Agenda-Building, 2nd ed. (Baltimore: Johns Hopkins University Press, 1983).Google Scholar
3. Box, Richard, Citizen Governance: Leading American Communities into the 21 st Century (Thousand Oaks, CA: Sage Publications, 1998).CrossRefGoogle Scholar
4. Dahl, Robert, “A Democratic Dilemma: System Effectiveness versus Citizen Participation,” Political Science Quarterly 109 (1994): 23–34.CrossRefGoogle Scholar
5. DeSario, Jack and Langton, Stuart, eds., Citizen Participation in Public Decision Making (New York: Greenwood Press, 1987).Google Scholar
6. Gutmann, Amy and Thompson, Dennis, Democracy and Disagreement (Cambridge: Harvard University Press, 1996).Google Scholar
7. Hart, David, “Theories of Government Related to Decentralization and Citizen Participation,” Public Administration Review 32 (1972): 603–21.Google Scholar
8. Langton, Stuart, ed., Citizen Participation in America (Lexington, MA: Lexington Books, 1978).Google Scholar
9. Petersen, James, ed., Citizen Participation in Science Policy (Amherst: University of Massachusetts Press, 1984).Google Scholar
10. Putnam, Robert, Bowling Alone: The Collapse and Revival of American Community (New York: Simon & Schuster, 2000).Google Scholar
11. Skocpol, Theda and Fiorina, Morris, eds., Civic Engagement in American Democracy (Washington, D.C.: Brookings Institution Press, 1999).Google Scholar
12. Wamsley, Gary et al., Refounding Public Administration (Newbury Park, CA: Sage Publications, 1990).Google Scholar
13. Abel, Troy and Stephan, Mark, “The Limits of Civic Environmentalism,” The American Behavioral Scientist 44 (2000): 614–28.Google Scholar
14. Bockmeyer, Janice, “A Culture of Distrust: The Impact of Local Political Culture on Participation in the Detroit EZ,” Urban Studies 37 (2000): 2417–40.Google Scholar
15. Chopyak, Jill, “Citizen Participation and Democracy: Examples in Science and Technology,” National Civic Review 90 (2001): 375–81.Google Scholar
16. Gittell, Marilyn et al., “Expanding Civic Opportunity: Urban Empowerment Zones,” Urban Affairs Review 33 (1998): 530–58.CrossRefGoogle Scholar
17. Gormley, William, “The Representation Revolution: Reforming State Regulation Through Public Representation,” Administration & Society 18 (1986): 179–96.Google Scholar
18. Hollander, Rachelle, “Institutionalizing Public Service Science: Its Perils and Promise,” in Citizen Participation in Science Policy, Petersen, James, ed. (Amherst: University of Massachusetts Press, 1984): 75–95.Google Scholar
19. Johnson, Kimberly, “Community Development Corporation and the Bedford-Stuyvesant Restoration Corporation,” Annals of the American Academy of Political and Social Science 594 (2004): 109–24.Google Scholar
20. Checkoway, Barry and Til, Jon Van, “What Do We Know about Citizen Participation? A Selective Review of Research,” in Citizen Participation in America, Langton, Stuart, ed. (Lexington: D.C. Heath and Company, 1978): 25–42.Google Scholar
21. Harwood, Richard, “Finding the Right Path: Public Agencies and Civic Engagement,” National Civic Review (2004): 74–76.Google Scholar
22. Stivers, Camilla, “Active Citizenship and Public Administration,” in Refounding Public Administration, Wamsley, Gary, ed. (Newbury Park, CA: Sage Publications, 1990): 246–73.Google Scholar
23. Abramson, David, “The Rules of Engagement: How Federal AIDS Policy Shaped Community Participation, and Was Shaped By It,” Ph.D. dissertation, Columbia University, 2005.Google Scholar
24. Checkoway, Barry, “Consumers and Health Planning: Issues and Opportunities,” in Citizen Participation in Science Policy, Petersen, James, ed. (Amherst: University of Massachusetts Press, 1984): 130–46.Google Scholar
25. Entwistle, Vikki et al., “Lay Perspectives: Advantages for Health Research,” British Medical Journal 316 (1998): 463–66.Google Scholar
26. Lomas, Jonathan et al., “On Being a Good Listener: Setting Priorities for Applied Health Services Research,” The Milbank Quarterly 81 (2003): 363–88.Google Scholar
27. Morone, James, The Democratic Wish: Popular Participation and the Limits of American Government (New Haven: Yale University Press, 1998).Google Scholar
28. Morone, James and Kilbreth, Elizabeth, “Power to the People? Restoring Citizen Participation,” Journal of Health Politics, Policy and Law 28 (2003): 271–88.Google Scholar
29. Oliver, Sandra, “How Can Health Service Users Contribute to the NHS Research and Development Programme?” British Medical Journal 310 (1995): 1318–20.Google Scholar
30. Epstein, Steven, Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 1996).Google Scholar
31. Kedrowski, Karen and Sarow, Marilyn, “The Gendering of Cancer Policy: Media Advocacy and Congressional Policy Attention,” in Women Transforming Congress, Rosenthal, Cindy, ed. (Norman: University of Oklahoma Press, 2002): 240–58.Google Scholar
32. Macllwain, Colin, “AIDS Activists Say Basic Research is Underfunded,” Nature 363 (1993): 388.CrossRefGoogle Scholar
33. Marshall, Eliot, “The Politics of Breast Cancer,” Science 259 (1993): 616–17.Google Scholar
34. Boote, Jonathan, Telford, Rosemary, and Cooper, Cindy, “Consumer Involvement in Health Research: A Review and Research Agenda,” Health Policy 61 (2002): 213–36.Google Scholar
35. Caron-Flinterman, J. Francisca, Broerse, Jacqueline, and Bunders, Joske, “The Experiential Knowledge of Patients: A New Resource for Biomedical Research?” Social Science & Medicine 60 (2004): 2575–84.Google Scholar
36. Dutton, Diana, “The Impact of Public Participation in Biomedical Policy: Evidence from Four Case Studies,” in Citizen Participation in Science Policy, Petersen, James, ed. (Amherst: University of Massachusetts Press, 1984): 147–79.Google Scholar
37. Oliver, Sandy et al., “Involving Consumers in a Needs-Led Research Programme: A Pilot Project,” Health Expectations 4 (2001): 18–28.CrossRefGoogle Scholar
38. Callahan, Daniel, “Shaping Biomedical Research Priorities: The Case of the National Institutes of Health,” Health Care Analysis 7 (1999): 115–29.Google Scholar
39. Callahan, Daniel, What Price Better Health? Hazards of the Research Imperative (Berkeley: University of California Press, 2003).Google Scholar
40. Dresser, Rebecca, “Public Advocacy and Allocation of Federal Funds for Biomedical Research,” The Milbank Quarterly 77 (1999): 257–74.Google Scholar
41. Dresser, Rebecca, When Science Offers Salvation: Patient Advocacy and Research Ethics (New York: Oxford University Press, 2001).Google Scholar
42. Tengs, Tammy, “Planning for Serendipity: A New Strategy to Prosper from Health Research,” Progressive Policy Institute Health Priorities Project Policy Report No. 2, July 1998.Google Scholar
43. National Research Council/Institute of Medicine, Enhancing the Vitality of the National Institutes of Health (Washington, D.C.: The National Academies Press, 2003).Google Scholar
44. Institute of Medicine, Scientific Opportunities and Public Needs: Improving Priority Setting and Public Input at the National Institutes of Health (Washington, D.C., 1998).Google Scholar
45. American Diabetes Association, http://www.diabetes.org/advocacy-and-legalresources/federal_legislation/overview.jsp, 2006.Google Scholar
46. Zerhouni, Elias, “The NIH Roadmap,” Science 302 (2003): 63–64, 72.Google Scholar
47. Council of Public Representatives, Report to the Director of the National Institutes of Health on the Organizational Structure and Management of the NIH, 2 December 2002.Google Scholar
48. Johnson, Judith, Disease Funding and NIH Priority Setting, Report 97–917 (Washington, D.C.: Congressional Research Service, 26 March 1998).Google Scholar
49. Lappin, Debra, WHI and HRT: How Science Informs Individuals' Health Decisions — the Public Perspective. Summary of Presentation — draft speech (2004).Google Scholar
50. Marshall, Eliot, “Lobbyists Seek to Reslice NIH's Pie,” Science 276 (1997): 334–36.Google Scholar
51. National Institutes of Health, http://www.nih.gov/about/researchpriorities.htm, 2006.Google Scholar
52. Bishop, Michael and Varmus, Harold, “Re-Aim Blame for NIH's Hard Times,” Science 312 (2006): 499.Google Scholar
53. Congress, U.S., P.L. 105–78, Sec. 213. U.S. Departments of Labor, Health and Human Services, and Education Appropriations Act of 1998 (1997).Google Scholar
54. U.S. Senate, Biomedical Research Priorities: Who Should Decide? Hearing, Subcommittee on Public Health and Safety, Senate Committee on Labor and Human Resources (1 May 1997).Google Scholar
55. U.S. Congress, Managing Biomedical Research to Prevent and Cure Disease in the 21 st Century: Matching NIH Policy with Science, Joint Hearing, House Committee on Energy and Commerce, Senate Committee on Health, Education, Labor, and Pensions (2 October 2003).Google Scholar
56. National Institutes of Health, http://public-council.nih.gov/minutes/092398minutes.asp, 1998.Google Scholar
57. National Institutes of Health, COPR Charter (Bethesda: National Institutes of Health, 1998).Google Scholar
58. National Institutes of Health, http://copr.nih.gov/factsheet.asp, 2006.Google Scholar
59. National Institutes of Health, http://www.nih.gov/minutes/spring2000/htm, 2000.Google Scholar
60. National Institutes of Health, http://copr.nih.gov/minutes/spring2001.shtm, 2001.Google Scholar
61. National Institutes of Health, http://copr.nih.gov/minutes/fall2001.shtm, 2001.Google Scholar
62. National Institutes of Health, http://copr.nih.gov/minutes/spring2003.shtm, 2003.Google Scholar
63. National Institutes of Health, Director's Council of Public Representatives Handbook: History, Values, and Operations Guide (Internal document, Spring 2004 revision).Google Scholar
64. General Accounting Office, Additional Guidance Could Help Agencies Better Ensure Independence and Balance, GAO-04-328 (April 2004).Google Scholar
65. Pitkin, Hannah, The Concept of Representation (Berkeley: University of California Press, 1967): 209.Google Scholar
66. Shalala, Donna, Public comments made by former Health and Human Services Secretary, panel talk at the Midwest Political Science Association meeting, Chicago, IL. (17 April 2004).Google Scholar
67. National Institutes of Health, http://www.copr.nih.gov/mission.asp, 2006.Google Scholar
68. National Institutes of Health, http://www.nih.gov/about/director/acd.htm, 2006.Google Scholar
69. National Institutes of Health, http://deainfo.nci.nih.gov/ADVISORY/dclg/dclgchr.htm, 2004.Google Scholar
70. Fussell, Kennett, General Services Administration, Committee Management Secretariat, Telephone discussions with author (28 April 2004, 22 July 2005).Google Scholar
71. General Services Administration, http://www.fido.gov/facadatabase, 2006.Google Scholar
72. Boyd, Robert, “Scientists Debate Value of Citizens' Advisory Panels,” LexisNexis Academic/Washington Dateline (10 August 2003).Google Scholar
73. Russett, Bruce, “International Behavior Research: Case Studies and Cumulation,” in Approaches to the Study of Political Science, Haas, Michael and Kariel, Henry, eds. (Scranton: Chandler, 1970): 425–43.Google Scholar
74. Moynihan, Daniel, Maximum Feasible Misunderstanding (New York: The Free Press, 1969).Google Scholar
75. National Institutes of Health, http://copr.nih.gov/Human_research_protections.shtm#executive, 2001.Google Scholar
76. National Institutes of Health, http://copr.nih.gov/COPRIOMResponse2004.pdf, 2004.Google Scholar
77. National Institutes of Health, http://copr.nih.gov/public_library_science.shtm, 2003.Google Scholar
78. National Institutes of Health, http://copr.nih.gov/reports.asp, 2005.Google Scholar
79. General Services Administration, http://www.gsa.gov/Portal/gsa/ep/channelViewdo?pageTypeld=8203&channelPage+/ep/c, 2004.Google Scholar
80. National Institutes of Health, http://copr.nih.gov/meetings.asp, 2006.Google Scholar
81. Dickson, David, The New Politics of Science (New York: Pantheon Books, 1984).Google Scholar
82. McGeary, Michael and Smith, Philip, Organizational Structure of the National Institutes of Health, Background Paper for the National Academies' Committee on the Organizational Structure of the National Institutes of Health (Washington, D.C., 2002).Google Scholar
83. National Institutes of Health, Setting Research Priorities at the National Institutes of Health (Bethesda: National Institutes of Health, 2003).Google Scholar
84. Rosener, Judy, “Matching Method to Purpose: The Challenges of Planning Citizen-Participation Activities,” in Citizen Participation in America, Langton, Stuart, ed. (Lexington: D.C. Heath and Company, 1978): 109–22.Google Scholar
85. Burgin, Eileen, “Congress, Health Care, and Congressional Caucuses: An Examination of the Diabetes Caucus,” Journal of Health Politics, Policy and Law 28 (2003): 789–820.Google Scholar
86. National Institutes of Health, http://www.nih.gov/about/transnih.htm, 2006.Google Scholar
87. NIH Working Group on Priority Setting, Setting Research Priorities at the National Institutes of Health, NIH Publication No. 97-4265 (Bethesda: National Institutes of Health, 1997).Google Scholar
88. Fiorina, Morris, “Extreme Voices: A Dark Side of Civic Engagement,” in Civic Engagement in American Democracy, Skocpol, Theda and Fiorina, Morris, eds. (Washington, D.C.: Brookings Institution Press, 1999): 395–425.Google Scholar
89. Rosenbaum, Walter, “Public Involvement as Reform and Ritual: The Development of Federal Participation Programs,” in Citizen Participation in America, Langton, Stuart, ed. (Lexington: D.C. Heath and Company, 1978): 93.Google Scholar
90. Wright, Laura, “Bush's Stealth Attacks,” Onearth 26 (2004): 20–21.Google Scholar
91. National Institutes of Health, http://copr.nih.gov/current_members.asp, 2006.Google Scholar
92. Hiller, Elaine, Landenburger, Gretchen, and Natowicz, Marvin, “Public Participation in Medical Policy-Making and the Status of Consumer Autonomy,” American Journal of Public Health 87 (1997): 1280–88.Google Scholar
93. Cohen, William and Mitchell, George, Men of Zeal: A Candid Inside Story of the Iran-Contra Hearings (New York: Penguin Books, 1989).Google Scholar
94. Metheny, Brodie, “NIH Investment Must Be Protected, National Health Council's Weinberg Argues,” The Washington FAX (11 March 2004).Google Scholar
95. Congressional Committee Staff Aide (anonymity requested), Telephone discussion with author (15 February 2006).Google Scholar
96. Knickerbocker, Brad, “A Tough Look at a Key Environmental Law,” Christian Science Monitor (28 November 2005).Google Scholar
97. Luther, Linda, The National Environmental Policy Act: Streamlining NEPA, Congressional Research Service Report for Congress (Washington, D.C.: Congressional Research Service, 13 February 2006).Google Scholar
98. Kriz, Margaret, “Bush's Quiet Plan,” National Journal 34 (23 November 2002).Google Scholar
99. NIH/COPR Staff Person, Telephone interview with author (1 March 2004).Google Scholar
100. Davidson, Roger and Oleszek, Walter, Congress and Its Members, 10th ed. (Washington, D.C.: CQ Press, 2006): 360.Google Scholar
101. McCubbins, Matthew and Schwartz, Thomas, “Congressional Oversight Overlooked: Police Patrol versus Fire Alarm,” American Journal of Political Science (February 1984): 165–77.Google Scholar
102. Fessler, Pamela, “Complaints Are Stacking Up as Hill Piles on Reports,” Congressional Quarterly Weekly Report (7 September 1991): 2562.Google Scholar
103. Department of State, http://www.state.gov/g/drl/hr, 2006.Google Scholar
104. Burgin, Eileen, “Assessing Congress's Role in the Making of Foreign Policy,” in Congress Reconsidered, 6th ed., Dodd, Lawrence and Oppenheimer, Bruce, eds. (Washington, D.C.: CQ Press, 1997): 293–324.Google Scholar
105. King, Gary, Keohane, Robert, and Verba, Sidney, Designing Social Inquiry: Scientific Inference in Qualitative Research (Princeton: Princeton University Press, 1994): 112.Google Scholar