GOVERNANCE OF HUMAN GENETICS:

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GOVERNANCE OF HUMAN GENETICS THE MEDIA AND
PUBLIC TRUST Brian Salter Mavis Jones
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Science and Laika
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• Overview
• The Politics of Public Trust
• Pressures for Change
• Issues
• Response
• Policy Communities and the Territories of
  Governance
• Functions of the Media
• Project Style

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

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• 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

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• 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

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

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An Embryonic Policy Community
Citizens
Policy Community
Ministers
Policy Networks
Consumers
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The Political Territories
of Biotechnology Governance

Regulation Activity Biotechnology Standard
Monitoring and Intervention
Activity Setting 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
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Functions of the Media
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Political territories of the media
shadow governanceArea of
Media ActivityKnowledge Standard Monito
ring and InterventionControl Setting Evaluation
ResearchDevelopmentProduction
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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.
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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 Hitlers 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.
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Human cloning plans under fire
Caption Antinori and Zavos Aim to go ahead
with plans BBC News online (http//bbc.news.co.u
k) Saturday, 10 March, 2001
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• Project Style
• Policy engagement
• Applied theory
• Inclusivity
• Stakeholder dialogue

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

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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