This paper explores the difficulties of addressing ethical questions of genome research in a public engagement setting where laypeople and scientists met for a longer period of time. While professional ethics mostly ignores public meaning, we aimed at a bottom-up approach to ethics in order to broaden the way in which ethical aspects of genomics can be addressed. However, within this interaction we identified a number of difficulties that constrained an open discussion on ethical issues. Thus, we analyze how ethical issues were approached, framed, debated, displaced or closed. We then elaborate on the possibilities and limits of dealing with ethics in such a participatory setting. We conclude by hinting at what should be taken into consideration when approaching issues of science and ethics more “upstream.”
References
1.
Anderson, B. (1983) Imagined Communities: Reflections on the Origin and Spread of Nationalism. London: Verso.
2.
Ashcroft, R.E. (2003) "Constructing Empirical Bioethics: Foucauldian Reflections on the Empirical Turn in Bioethics Research," Health Care Analysis11(1): 3-13.
3.
Beck, U. (1997) The Reinvention of Politics: Rethinking Modernity in the Global Social Order. Cambridge: Polity Press.
4.
Bodmer, W. (1985) The Public Understanding of Science. London: Royal Society.
5.
Bogner, A. and Menz, W. (2005) "Bioethical Controversies and Policy Advice: The Production of Ethical Expertise and its Role in the Substantiation of Political Decision-making," in S. Maasen and P. Weingart (eds) Democratization of Expertise: Exploring Novel Forms of Scientific Advice in Political Decision-making , pp. 21-40. Dordrecht: Springer.
6.
Borry, P., Schotsmans, P. and Dierickx, K. (2005) "The Birth of the Empirical Turn in Bioethics," Bioethics19(1): 49-71.
7.
Burgess, M.M. (2004) "Public Consultation in Ethics: An Experiment in Representative Ethics," Journal of Bioethical Inquiry1(1): 4-13.
8.
Crosthwaite, J. (1995) "Moral Expertise: A Problem in the Professional Ethics of Professional Ethicists", Bioethics9(5): 361-379.
9.
Epstein, S. (1996) Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.
10.
European Commission (EC) (2001) European Governance: A White Paper. COM(2001) 428 final, 25 July 2001. Brussels: European Commission .
11.
European Commission (EC) (2002a) Science and Society-Action Plan. Luxembourg: Office for Official Publications of the European Communities.
12.
European Commission (EC) (2002b) Towards a Reinforced Culture of Consultation and Dialogue: General Principles and Minimum Standards for Consultation of Interested Parties by the Commission. COM(2002) 704 final, 11 December 2002. Brussels: European Commission.
13.
European Commission (EC) (2005) Science in Society Forum 2005: Setting the Stage. Brussels : European Commission.
14.
Evans, J.H. (2002) Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate. Chicago and London: University of Chicago Press .
15.
Felt, U. (2003) "Sciences, Science Studies and their Publics: Speculating on Future Relations," in B. Joerges and H. Nowotny (eds) Social Studies of Science and Technology: Looking Back Ahead, pp. 11-31. Dordrecht : Kluwer Academic Publishers.
16.
Felt, U., Fochler, M. and Müller, A. (2003) Sozial robuste Wissenspolitik: Analyse des Wandels von dialogisch orientierten Interaktionen zwischen Wissenschaft, Politik und Öffentlichkeit. Gutachten für das Büro für Technikfolgenabschätzung (TAB) beim Deutschen Bundestag.
17.
Gerold, R. and Liberatore, A. (2001) Democratising Expertise and Establishing Scientific Reference Systems: Report of the Working Group 1b for the White Paper on Governance . Brussels: European Commission .
18.
Giddens, A. (1990) The Consequences of Modernity. Cambridge: Polity Press.
19.
Gieryn, T. (1999) Cultural Boundaries of Science: Credibility on the Line. Chicago: University of Chicago Press.
20.
Haimes, E. (2002) "What can the Social Sciences Contribute to the Study of Ethics? Theoretical, Empirical and Substantive Considerations," Bioethics16(2): 89-113.
21.
Hedgecoe, A.M. (2004) "Critical Bioethics: Beyond the Social Science Critique of Applied Ethics," Bioethics18(2): 120-43.
22.
Irwin, A. (2001) "Constructing the Scientific Citizen: Science and Democracy in the Biosciences," Public Understanding of Science10(1): 1-18.
23.
Irwin, A. (2006) "The Politics of Talk: Coming to Terms with the `New Scientific Governance,'" Social Studies of Science36(2): 299-320.
24.
Irwin, A. and Michael, M. (2003) Science, Social Theory and Public Knowledge. Maidenhead: Open University Press.
25.
Irwin, A. and Wynne, B., eds (1996) Misunderstanding Science? The Public Reconstruction of Science and Technology. Cambridge : Cambridge University Press.
26.
Jasanoff, S. (1997) "Civilization and Madness: The Great BSE Scare of 1996," Public Understanding of Science6: 221-32.
27.
Jasanoff, S. (2005) Designs on Nature: Science and Democracy in Europe and the United States. Princeton and Oxford: Princeton University Press.
28.
Joss, S. and Bellucci, S., eds (2002) Participatory Technology Assessment: European Perspectives. London: Centre for the Study of Democracy (CSD) at University of Westminster in association with TA Swiss.
29.
Knorr-Cetina, K. (1981) The Manufacture of Knowledge: An Essay on the Constructivist and Contextual Nature of Science. Oxford: Pergamon Press.
30.
Latour, B. (1991) "Technology is Society Made Durable," in J. Law (ed.) A Sociology of Monsters: Essays on Power, Technology and Domination, pp. 103-31. London: Routledge.
31.
Latour, B. (1992) "Where are the Missing Masses? Sociology of a Few Mundane Artefacts," in W. Bijker and J. Law (eds) Shaping Technology, Building Society: Studies in Sociotechnical Change, pp. 225-58. Cambridge, MA: MIT Press.
32.
Law, J. (2004) After Method: Mess in Social Science Research. Abingdon and New York: Routledge .
33.
Levitt, M. (2003) "Public Consultation in Bioethics. What's the Point in Asking the Public When They Have Neither Scientific nor Ethical Expertise? ", Health Care Analysis11(1): 15-25.
34.
Levitt, M. and Häyry, M. (2005) "Overcritical, Overfriendly? A Dialogue between a Sociologist and a Philosopher on Genetic Technology and its Applications ," Medicine, Health Care and Philosophy8: 377-83.
35.
Limoges, C. (1993) "Expert Knowledge and Decision-making in Controversy Contexts," Public Understanding of Science2(4): 417-26.
36.
Lopez, J. (2004) "How Sociology Can Save Bioethics … Maybe ," Sociology of Health and Illness26(7): 875-96.
37.
Michael, M. and Brown, N. (2005) "Scientific Citizenships: Self-representations of Xenotransplantation's Publics," Science as Culture14(1): 39-57.
38.
Nowotny, H., Scott, P. and Gibbons, M. (2001) Re-Thinking Science: Knowledge and the Public in an Age of Uncertainty. Cambridge: Polity Press.
39.
Pinch, T.J. and Bijker, W.E. (1984) "The Social Construction of Facts and Artifacts: Or How the Sociology of Science and the Sociology of Technology Might Benefit Each Other," in W.E. Bijker, T.P. Hughes and P.T. Trevor (eds) The Social Construction of Technological Systems , pp. 17-50. Cambridge, MA: MIT Press.
40.
Rose, N. (1999) Powers of Freedom: Reframing Political Thought . Cambridge: Cambridge University Press.
41.
Salter, B. and Salter, C. (2007) "Bioethics and the Global Moral Economy. The Cultural Politics of Human Embryonic Stem Cell Science", Science, Technology & Human Values32(5): 554-581.
42.
Tallacchini, M. (2006) "Politics of Ethics and EU Citizenship", Politeia XXII (83): 101-113.
43.
Wilsdon, J. and Willis, R. (2004) See-through Science: Why Public Engagement Needs to Move Upstream. London: Demos .
44.
Wilsdon, J., Wynne, B. and Stilgoe, J. (2005) The Public Value of Science: Or How to Ensure that Science Really Matters. London: Demos.
45.
Wynne, B. (1992) "Misunderstood Misunderstanding: Social Identities and Public Uptake of Science," Public Understanding of Science1(3): 281-304.
46.
Wynne, B. (1996) "May the Sheep Safely Graze? A Reflexive View of the Expert-Lay Knowledge Divide," in B. Szerszynski , S. Lash and B.E. Wynne (eds) Risk, Environment and Modernity: Towards a New Ecology, pp. 44-83. London: SAGE.
