Public bioethics and publics: Consensus, boundaries, and participation in biomedical science policy

Science Technology and Human Values

Volumn 28, Issue 3, 2003, Pages 339-364

  Kelly, Susan E ^a  

^a UNIVERSITY OF LOUISVILLE   (United States)

Author keywords

Bioethics; Boundary organizations; Consensus; Human embryo research; Public participation in science; Science policy

Indexed keywords

ADVISORY COMMITTEE; ANALYTICAL APPROACH; BIOETHICS; BIOETHICS AND PROFESSIONAL ETHICS; BIOMEDICAL AND BEHAVIORAL RESEARCH; CONSENSUS; CONSUMER; EMBRYO RESEARCH; ETHICS; FINANCIAL MANAGEMENT; GENETICS AND REPRODUCTION; GOVERNMENT; HEALTH CARE ORGANIZATION; HISTORY; HUMAN; HUMAN EMBRYO RESEARCH PANEL; MANAGEMENT; POLICY; REVIEW; SCIENCE; SOCIOLOGY; UNITED STATES;

ANALYTICAL APPROACH; BIOETHICS AND PROFESSIONAL ETHICS; BIOMEDICAL AND BEHAVIORAL RESEARCH; GENETICS AND REPRODUCTION; HUMAN EMBRYO RESEARCH PANEL;

ADVISORY COMMITTEES; BIOETHICAL ISSUES; BIOETHICS; CONSENSUS; CONSUMER PARTICIPATION; EMBRYO RESEARCH; FEDERAL GOVERNMENT; FINANCING, GOVERNMENT; HISTORY, 20TH CENTURY; HUMANS; NATIONAL INSTITUTES OF HEALTH (U.S.); POLICY MAKING; PUBLIC POLICY; RESEARCH SUPPORT; SCIENCE; SOCIOLOGY; UNITED STATES;

EID: 30244576255     PISSN: 01622439     EISSN: None     Source Type: Journal    
DOI: 10.1177/0162243903028003001     Document Type: Review

References (66)

1. Bayertz, K. 1994a. Introduction: Moral consensus as a social and philosophical problem. In The moral concept of consensus: The case of technological interventions in human reproduction, edited by K. Bayertz, 1-15. Dordrecht, the Netherlands: Kluwer Academic.
2. _, ed. 1994b. The moral concept of consensus: The case of technological interventions in human reproduction. Dordrecht, the Netherlands: Kluwer Academic.
3. Benjamin, M. 1995. The value of consensus. In Society's choices: Social and ethical decision mating in biomedicine, edited by R. E. Bulger, E. M. Bobby, and H. V. Fineberg, 241-60. Washington, DC: National Academy Press.
4. Brock, D. W. 1995. Public moral discourse. In Society's choices: Social and ethical decision making in biomedicine, edited by R. E. Bulger, E. M. Bobby, and H. V. Fineberg, 215-40. Washington, DC: National Academy Press.
5. Bulger, R. E., E. M. Bobby, and H. V. Fineberg, eds. 1995. Society's choices: Social and ethical decision making in bioethics. Washington, DC: National Academy Press.
6. Burt, R. A. 1984. The ideal of community in the work of the President's Commission. Cardozo Law Review 6 (2): 267-86.
7. Capron, Alexander M. 1983. Looking back at the President's Commission. Hastings Center Report 13 (5): 7-12.
8. Casarett, D. J., F. Daskal, and J. Lantos. 1998. Experts in ethics? The authority of the clinical ethicist. Hastings Center Report 28 (6): 6-11.
9. Casper, M. J. 1998. The making of the unborn patient: A social anatomy of fetal surgery. New Brunswick, NJ: Rutgers University Press.
10. Charo, R. A. 1995. The hunting of the snark: The moral status of embryos, right-to-lifers, and Third World women. Stanford Law and Policy Review 6 (2): 1-38.
11. Clymer, Adam. 2001. The nation: Wrong number; the unbearable lightness of public opinion polls. The New York Times, 22 July, sec. 4, p. 3.
12. Collingridge, David, and Colin Reeve. 1986. Science speaks to power: The role of experts in policymaking. New York: St. Martin's.
13. Conference Proceedings. 1995. The role of bioethics in health care policy. Minneapolis: University of Minnesota, Center for Biomedical Ethics.
14. Cozzens, S. E., and E. J. Woodhouse. 1995. Science, government, and the politics of knowledge. In Handbook of science and technology studies, edited by S. Jasanoff, O. E. Markle, J. C. Petersen, and T. Pinch, 533-53. Thousand Oaks, CA: Sage.
15. Danish Council of Ethics. 1992. The Danish Council of Ethics. International Journal of Bioethics 3(4):258-61.
16. Epstein, S. 1995. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology, & Human Values 20:408-37.
17. _. 1996. Impure science: AIDS, activism, and the politics of knowledge. Berkeley: University of California Press.
18. Evans, J. H. 2002. Playing God? Human genetic engineering and the rationalization of public bioethical debate. Chicago: University of Chicago Press.
19. Ezrahi, Y. 1990. The descent of Icarus: Science and the transformation of contemporary democracy. Cambridge, MA: Harvard University Press.
20. Fletcher, J. C. 1991. The bioethics movement and hospital ethics committees. Maryland Law Review 50 (3): 859-94.
21. Fox, R. C. 1991. The evolution of American bioethics: A sociological perspective. In Social science perspectives on medical ethics, edited by G. Weisz, 201-17. Philadelphia: University of Pennsylvania Press.
22. Franklin, S. 1999. What we know and what we don't know about cloning and society. New Genetics and Society 18 (1): 111-20.
23. Fujimura, J. H. 1992. Grafting science: Standardized packages, boundary objects, and "translation." In Science as practice and culture, edited by A. Pickering, 168-211. Chicago: University of Chicago Press.
24. Gieryn, T. F. 1995. Boundaries of science. In Handbook of science and technology studies, edited by S. Jasanoff, G. E. Markle, J. C. Petersen, and T. Pinch, 393-443. Thousand Oaks, CA: Sage.
25. Gray, B. H. 1995. Bioethics commissions: What can we learn from past successes and failures? In Society's choices: Social and ethical decision making in bioethics, edited by R. E. Bulger, E. M. Bobby, and H. V. Fineberg, 261-306. Washington, DC: National Academy Press.
26. Green, Ronald M. 1994. At the vortex of controversy: Developing guidelines for human embryo research. Kennedy Institute of Ethics Journal 4 (4): 345-56.
27. _. 1995. The Human Embryo Research Panel: Lessons for public ethics. Cambridge Quarterly of Health Care Ethics 4:502-15.
28. Guston, D. H. 1999a. Evaluating the first U.S. consensus conference: The impact of the "citizens" panel on telecommunications and the future of democracy. Science, Technology, & Human Values 24 (4): 451-82.
29. _. 1999b. Stabilizing the boundary between U.S. politics and science: The role of the Office of Technology Transfer as a boundary organization. Social Studies of Science 29 (1): 87-111.
30. Hanna, K. E., R. M. Cook-Deegan, and R. Y. Nashimi. 1993. Finding a forum for bioethics in U.S. public policy. Politics and the Life Sciences 12 (2): 205-19.
31. Human Embryo Research Panel. 1994a. Proceedings of the meeting of the Human Embryo Research Panel. Transcripts, 2 February. Bethesda, MD: Human Embryo Research Panel.
32. _. 1994b. Report of the Human Embryo Research Panel: Ad hoc group of consultants to the advisory committee to the director, NIH. Vol. 1, 27 September 1994. Bethesda, MD: U.S. National Institutes of Health.
33. Jasanoff, S.S. 1987. Contested boundaries in policy-relevant science. Social Studies of Science 17 (2): 195-230.
34. _. 1990. The fifth branch: Science advisors as policy makers. Cambridge, MA: Harvard University Press.
35. Jennings, B. 1991. Possibilities of consensus: Toward democratic moral discourse. Journal of Medicine and Philosophy 16:447-63.
36. Jonsen, A. R. 1993. Commentary: Scofield as Socrates. Cambridge Quarterly of Health Care Ethics 2 (4): 434-38.
37. Kuhse, H. 1994. New reproductive technologies: Ethical conflict and the problem of consensus. In The moral concept of consensus: The case of technological interventions in human reproduction, edited by K. Bayertz, 75-96. Dordrecht, the Netherlands: Kluwer Academic.
38. Kymlicka, W. 1993. Moral philosophy and public policy: The case of NRTs. Bioethics 7 (1): 1-16.
39. Latour, B., and S. Woolgar. 1979. Laboratory life: The construction of scientific facts. Beverly Hills, CA: Sage.
40. Lebacqz, K., M. M. Mendiola, T. Peters, Ernest W. D. Young, and L. Zoloth-Dorfman. 1999. Research with human embryonic stem cells: Ethical considerations (Geron Ethical Advisory Board). Hastings Center Report 29 (2): 31-36.
41. Moore, K. 1996. Organizing integrity: American science and the creation of public interest organizations, 1955-1975. American Journal of Sociology 101 (6): 1592-627.
42. Moreno, J. D. 1988. Ethics by committee: The moral authority of consensus. Journal of Medicine and Philosophy 13:411-31.
43. _. 1990. What means this consensus? Ethics committees and philosophical tradition. Journal of Clinical Ethics 1:38-43.
44. _. 1991. Consensus, contracts, and committees. Journal of Medicine and Philosophy 16 (4): 393-408.
45. _. 1995. Deciding together: Bioethics and moral consensus. New York: Oxford University Press.
46. Mulkay, M. 1997. The embryo research debate: Science and the politics of reproduction. Cambridge, UK: Cambridge University Press.
47. Nelkin, D. 1984. Science and technology policy and the democratic process. In Citizen participation in science policy, edited by J. C. Petersen. Amherst: University of Massachusetts Press.
48. _. 1994. The public face of science: What can we learn from disputes? In The fragile contract: University science and the federal government, edited by D. H. Guston and K. Keniston, 101-7. Cambridge, MA: MIT Press.
49. Office of Technology Assessment, U.S. Congress. 1993. Biomedical ethics in U.S. public policy - Background paper. OTA-BP-BBS-105. Washington, DC: U.S. Government Printing Office.
50. Purdue, D. 1999. Experiments in the governance of biotechnology: A case study of the UK National Consensus Conference. New Genetics and Society 18 (1): 79-99.
51. Scofield, G. R. 1993. Ethics consultation: The least dangerous profession? Cambridge Quarterly of Health Care Ethics 2 (4): 417-26.
52. Shapin, S. 1995. Trust, honesty and the authority of science. In Society's choices: Social and ethical decision making in bioethics, edited by R. E. Bulger, E. M. Bobby, and H. V. Fineberg, 388-408. Washington, DC: National Academy Press.
53. Shapiro, R. S. 2001. Statement on "the ethics of cloning" before the United States House of Representatives Judiciary Committee Subcommittee on Crime, 7 June. Available from www.house.gov/judiciary/shapiro_060701.htm.
54. Spielman, B. 2001. Role related responsibilities of bioethics: Expert witnesses. Law and Bioethics Report (Institute for Bioethics, Health Policy and Law, University of Louisville) 1 (2): 6-7.
55. Star, S. L., and J. Griesemer. 1989. Institutional ecology, "translations" and coherence: Amateurs and professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39. Social Studies of Science 19:387-420.
56. Thomasma, D. C. 1997. Bioethics and international human rights. Journal of Law, Medicine & Ethics 25 (4): 295-306.
57. Tong, R. 1991. The epistemology and ethics of consensus: Uses and misuses of "ethical" expertise. Journal of Medicine and Philosophy 16 (4): 409-26.
58. Van der Sluijz, Jeroen, Joss Van Eijndhoven, Simon Shackley, and Brian Wynne. 1998. Anchoring devices for science in policy: The case of consensus around climate sensitivity. Social Studies of Science 28 (2): 291-323.
59. Veatch, R. M. 1991. Consensus of expertise: The role of consensus of experts in formulating public policy and estimating facts. Journal of Medicine and Philosophy 16 (4): 427-45.
60. Veatch, R. M., and J. D. Moreno. 1991. Consensus in panels and committees: Conceptual and ethical issues. Journal of Medicine and Philosophy 16 (4): 371-73.
61. Warnock, M. 1985. A question of life: The Warnock Report on human fertilization and embryology. Oxford, UK: Blackwell.
62. Weisbard, A. J., and J. D. Arras, 1984. Commissioning morality: An introduction to the symposium. Cardozo Law Review 6 (2): 223-41.
63. Wellcome Trust, Medicine and Society Programme. 1998. Public perspectives on human cloning. London: Wellcome Trust. Available from www.welcome.ac.uk.
64. Winner, L. 1986. The whale and the reactor: A search for limits in an age of high technology. Chicago: University of Chicago Press.
65. Wynne, B. 1999. Expert construction of lay epistemics. Paper presented at the annual meeting of the Society for Social Studies of Science (4S), October, San Diego, CA.
66. Yoder, S. D. 1998. The nature of ethical expertise. Hastings Center Report 28 (6): 11-19.