1. GOVERNANCE OF HUMAN GENETICS: THE MEDIA AND PUBLIC TRUST Brian Salter Mavis Jones

2. Science and Laika

3. Overview The Politics of Public Trust Pressures for Change Issues Response Policy Communities and the Territories of Governance Functions of the Media Project Style

4. The Politics of Public Trust Governance, trust and legitimacy Tension between public interest and industrial need Votes versus profits

5. Pressures for Change Decline in the authority of science An obsolescent Scientific Advisory [non-] System Citizens as consumers Politicisation of science Loss of state control of the discourse

6. Issues Genetic Screening (health) Genetic Screening (insurance and employment) Gene Therapy GM of animals Reproductive Cloning Stem cell research DNA databases and bioinformatics Intellectual property rights (IPR) Biological weapons

7. Response Change the regulatory structures and their operating principles Import new ‘experts’ in risk management and bioethics Self-regulation Rhetoric and reality

8. Ministers An Embryonic Policy Community Citizens Consumers Policy Community Policy Networks

9. The Political Territories of Biotechnology Governance Regulation Activity Biotechnology Standard Monitoring and Intervention ActivitySetting Evaluation Research MRC Ethics Committee Peer pressure Wellcome HFEA HFEA Development CSM CSM Ministers ICH BIA BIA Economic self- interest Production ACRE ACRE Ministers ACNFP ACNFP Ministers NICE NICE Ministers

10. Functions of the Media

11. Political territories of the media: ‘shadow governance’ Area of Media Activity KnowledgeStandardMonitoring andIntervention ControlSettingEvaluation Research Development Production

12. “The central precept of eugenics is the idea that the physical, mental and behavioural qualities of the human race can be improved by selective breeding …This belief was at least partially responsible for the appalling events of the 20th century in Nazi Germany…” - re: implications of genetic breakthroughs, Nuffield Council on Bioethics report, quoted in BBC News, March 19, 2001.

13. “ Yes, the real limit is the conscience of the researcher in a free society of the kind we live in. Of course, when the state establishes the limits, as in Hitler’s Germany, the researcher becomes a tool of the regime, and this gives rise to the monstrous research of people such as Josef Mengele…” - Severino Antinori, quoted in The Times, February 20/2001.

14. Human cloning plans under fire Caption: “Antinori and Zavos: Aim to go ahead with plans” BBC News online (http://bbc.news.co.uk) Saturday, 10 March, 2001

15. Project Style Policy engagement Applied theory Inclusivity Stakeholder dialogue

16. Conclusions Pluralistic governance Incorporating the irrational Negotiation not control of the political discourse Beyond regulation and public trust

17. Science and Phoenix BBC News Online (http://news.bbc.co.uk) Thursday, 26 April, 2001 Foot-and-mouth cull policy relaxed Caption: “Week-old calf Phoenix looks set to be spared”