Bioethics and democracy: Competing roles of national bioethics organisations

Bioethics

Volumn 20, Issue 6, 2006, Pages 326-338

  Dodds, Susan ^a   Thomson, Colin ^b  

^a UNIVERSITY OF WOLLONGONG   (Australia)

^b NONE

Author keywords

Bioethics policy; Democracy and pluralism; Health and medical research policy; National bioethics organisations

Indexed keywords

BIOETHICS; DECISION MAKING; HEALTH CARE ACCESS; INFERTILITY THERAPY; MEDICAL RESEARCH; ORGANIZATION; POLICY; POLITICAL SYSTEM; PUBLIC OPINION; REPRODUCTION; RESPONSIBILITY; REVIEW;

EID: 33749531983     PISSN: 02699702     EISSN: 14678519     Source Type: Journal    
DOI: 10.1111/j.1467-8519.2006.00511.x     Document Type: Review

References (40)

1. Information about these meetings and organisations can be found at http://www.who.int/ethics/globalsummit/summits/en/index.html [Accessed 14 August 2006] .
2. M. Allars. 1994. Report of the Inquiry into the Use of Pituitary Derived Hormones in Australia and Creutzfeldt-Jakob Disease. Report to the Minister for Human Services and Health, The Hon Dr C M Lawrence, Canberra, ACT. Australian Government Publishing Service.
3. U.S. Department of Health, Education and Welfare. 1973. Final Report of the Tuskegee Syphilis Study Ad Hoc Advisory Panel. Washington, DC.
4. U.S. House of Representatives. 1986. American Nuclear Guinea Pigs: Three Decades of Radiation Experiments on U. S. Citizens, A Sub-Committee Staff Report for the Subcommittee on Energy and Power of the Committee on Energy and Commerce. Washington, DC.
5. M. Warnock. 1985. A Question of life: the Warnock Report on Human Fertilisation and Embryology. Oxford, UK and New York, NY: Basil Blackwell.
6. Available at their respective websites http://www.newhealth.govt.nz/ acart and http://www.newhealth.govt.nz/ecart [Accessed 14 August 2006].
7. Danish Council of Ethics. 2003. Microinsemination and pre-implantation genetic diagnosis (PGD) Resumé of recommendations. Available at http://www.etiskraad.dk/sw1771.asp [Accessed 14 August 2006].
8. Some liberals argue that the state ought to be agnostic about 'the good', that liberalism doesn't espouse a particular substantive conception of the good, but rather that liberalism allows each individual to pursue his or her own substantive conception of the good; Kymlicka argues that liberalism is concerned with providing the conditions within which each individual can critically reflect on their conception of the good: liberalism allows for revisability of one's conception of the good. W. Kymlicka. 1989. Liberalism, Community and Culture. Oxford, UK and New York, NY: Clarendon: pp. 10-11.
9. J. Rawls. 1993. Political Liberalism. New York, NY: Basic Books, p. 212ff;
10. J. Habermas. 1988. Legitimation Crisis. T. McCarthy, trans. Oxford: Polity Press, p. 95ff.
11. For further discussion of deliberative democratic theory and its application to bioethics policy making see S. Dodds & R Ankeny. Regulation of hESC Research in Australia: Promises and Pitfalls of Deliberative Democratic Approaches. J Bioeth Inq 2006; 3: 95-107.
12. A term used by Colin Finney. C. Finney. Extending public consultation via the Internet: the experience of the UK Advisory Committee on Genetic testing electronic consultation. Sci Public Policy 1999; 26(5): 361-373, pp. 362-3.
13. J. Cohen. 1989. Deliberation and Democratic Legitimacy. In The Good Polity: Normative Analysis of the State. A. Hamlin and P. Pettit, eds. Oxford: Basil Blackwell: 17-34, p. 21.
14. J. Habermas. 1996. Between Facts and Norms: contributions to a discourse theory of law and democracy. W Rehg, trans. Cambridge, Mass: MIT Press: 305.
15. J. Waldron. 1993. Theoretical Foundations of Liberalism. In Liberal Rights: Collected Papers 1981-1991. J Waldron, ed. New York, NY: Cambridge University Press: 35-62, p. 44.
16. F. D'Agostino. Some Modes of Public Justification. Australas J Philos 1991; 69(4): 390-414.
17. See for example I. Young. 1990. Justice and the Politics of Difference. Princeton, NJ: Princeton University Press;
18. M. Sandel. 1982. Liberalism and the Limits of Justice. Cambridge, UK.: Cambridge University Press;
19. J. Rawls, Liberalism and the Limits of Justice. op. cit. note 9;
20. W. Kymlicka. 1995. Multicultural Citizenship: A Liberal Theory of Minority Rights. Oxford: Clarendon;
21. D. Ivison. 2002. Postcolonial Liberalism. Cambridge, UK: Cambridge University Press.
22. See for example Sandel, Postcolonial Liberalism. op. cit. note 15;
23. C. Mouffe. 1992. Democratic citizenship and the political community. In Dimensions of Radical Democracy. C. Mouffe, ed. London, UK: Verso; 225-239;
24. W.E. Connolly. 1999. Why I Am Not a Secularist. Minneapolis, MN: University of Minnesota Press.
25. Rawls, Why I Am Not a Secularist. op. cit. note 9, p. 144 ff.
26. A. Irwin. 1995. Citizen Science: a Study of People, Expertise and Sustainable Development. New York, NY: Routledge.
27. Cohen, Citizen Science: op. cit. note 11, p. 21.
28. Young, Citizen Science: op. cit. note 15, p. 72.
29. In later work on democracy, Young reconsidered the label 'interest group pluralism' and chose to use the term 'aggregative model' for these forms of decision-making. For our purposes the term 'interest group pluralism' better reflects the composition and processes of these NBOs. See I.M. Young. 2000. Inclusion and Democracy. Oxford and New York, NY: Oxford University Press: 19.
30. A. Irwin. Constructing the scientific citizen: science and democracy in the biosciences. Public Underst Sci, 2001; 10: 1-18, pp. 9-10.
31. Public Underst Sci, Ibid: 10.
32. Young, Public Underst Sci, op. cit. note 15, p. 72.
33. A. Gutmann and D. Thompson. Deliberating about Bioethics. Hastings Cent Rep. 1997; 27 (3): 38-41, p. 38.
34. Young, Hastings Cent Rep. op. cit. note 14, p. 173.
35. R. Macklin. 1999. Against Relativism: Cultural Diversity and the Search for Ethical Universals in Medicine. New York: Oxford University Press.
36. Ivison, Against Relativism: Cultural Diversity and the Search for Ethical Universals in Medicine. op. cit. note 15, 73-74.
37. J. Palca. The Fifth Commission. Hastings Cent Rep 1993; 23(4): 5.
38. G. Annas. Will The Real Bioethics (Commission) Please Stand Up? Hastings Cent Rep 1994; 24(1): 19-21.
39. Hastings Cent Rep Ibid: 20.
40. Hastings Cent Rep Ibid: 21.