The Politics of Human Genetics

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The Politics of Human Genetics Brian
Salter Mavis Jones
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Genetics in the public sphere

• Disease/disorder markers
• Gene therapy
• Reproductive applications
• Sibling/family studies
• Pharmacogenetics
• Bioindustrial applications
• Animal model research
• Agricultural animals
• Agricultural crops

• Bioinformatics/genetic data
• Ethical legal debates
• Cosmetic condition markers
• Behavioural markers
• Biological weapons
• Archaeological forensic genetics
• Celebrity scientists
• Pop culture genetic imagery
• Esoteric research

Table 1. Thematic catalogue of genetics issues
covered by BBCOnline, calendar year 2001. Search
conducted using keyword gene yielding a result
list of 260, roughly 21/month. Peak months
February, July, October lowest month June.
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Aim and Objectives The aim of the project is to
assess the ability of the new advisory and
regulatory framework for biotechnology to respond
to issues of public trust in the field of human
genetics. Within this, the objectives are

• to analyse the main components of the European
  Union and United States models of governance
  in human genetics
• in this context, to examine the perceptions of
  the governance requirements of public trust held
  by the regulators, consumer groups and the media
  in the UK
• against this background, to analyse the politics
  of the new governance machinery in human
  genetics
• to evaluate the ability of that governance
  policy to respond to issues of public trust
• to identify ways in which the policy can be
  improved.

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• Method
• Documentary analysis
• Media monitoring
• Interviews (95)
• Largely UK , some EU and US

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• Pressures for change
• The potential of the biotech industry
• Citizens, consumers and the market
• Regulation and legitimacy
• Decline in the authority of science
• A creaking Scientific Advisory non- System
• Politicisation of science
• Loss of state control of the genetics discourse

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• The political problem of governance
• Tension between scientific ambition, industrial
  need and the public interest
• Governance, trust and legitimacy

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• The politics of the governance of human genetics
  analytical elements
• Production of scientific knowledge
• Science, industry and civil society
• Policy community of human genetics governance
• Policy networks - national and transnational
• The media as political actor
• Public and private governance
• Ideology, discourse and the political culture

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The politics of the governance of biotechnology
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The formal governance of human genetics
HFEA
CSM
The Human Genetics Commission
GAIC
UKXIRA
GTAC
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• Whats not working?
• Movement from a closed to an open policy
  community of governance is painful
• Policy networks are embryonic
• Political culture is divided

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• The European context
• The economic imperative - learning from the GMO
  experience in food and agriculture
• The place of governance in the EUs strategy on
  biotechnology
• Specific directives 2001/18/EC (GMOs) and
  1998/44/EC (IPR and human genetics)
• Politicisation of human genetics at the EU
  level (Temporary Committee on Human Genetics)
• UKs position in the European debate on human
  genetics

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• Policy networks of industry
• BioIndustry Association (BIA)
• Association of British Pharmaceutical
  Industries (ABPI)
• Europabio
• European Federation of Pharmaceutical
  Industry Associations (EFPIA)
• Association of British Insurers

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• Policy networks of scientific governance
• Funding agencies (e.g. MRC, Wellcome)
• British Society for Human Genetics
• Joint Committee on Medical Genetics
• Human Genome Organisation (HUGO)
• European Society of Gene Therapy
• European Molecular Genetics Quality Network
• European Society of Human Genetics

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• Policy networks of civil society
• Disease based groups (e.g. Genetic Interest
  Group, the European Parkinsons Disease
  Association and Huntingdons Disease Association)
• Monitoring groups (e.g. Genewatch, Greenpeace)
• Patient groups (e.g. the European Alliance of
  Patient and Parent Organisations for Genetic
  Services and Innovation in Medicine)
• Religious groups (e.g. Conférence des Eglises
  Européennes, Christian Action Research and
  Education, Pro-Life Alliance)

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The politics of the governance of biotechnology
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• The role of the media

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Typical media research approaches

• Source based
• news values content analysis
• qualitative (frames, discourse)
• quantitative (column inches, subject keyword
  counts)
• political economy
• media ownership
• advertising
• readership statistics

• Destination based
• audience effects/reception
• attitude surveys (Likert-type scales, public
  opinion polls)
• consumption monitoring

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Research question What role does the media play
in human genetics policy networks?
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Recognition of a role for the media

• Human Genetics Commission
• Former Human Genetics Advisory Committee
• House of Commons Science Technology Committee
• European Union
• Council of Europe
• Wellcome Trust
• Nuffield Council on Bioethics
• Genewatch

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The media is one of the most important means
by which the general public receives information
about scientific issues and will therefore have a
key role to play in informing people about new
developments.- Nuffield Council on Bioethics,
Genetics human behaviour the ethical context
(2001)
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Project approach Methods

• Media monitoring (ongoing)
• Documentary analysis
• policy discourse
• structural acknowledgement
• Meta-analysis of content research
• major and minor studies of UK media research
• issues related to human genetics
• Elite interviewing semi-structured
  questionnaire
• how media operatives perceive their role in the
  policy process
• how our subjects in other samples perceive the
  role of the media
• how decisions are made in news production about
  human genetics
• what this tells us about the medias role

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The media as a broker in an emerging global
public policy network human genetics
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• The response of the policy community
• Change the regulatory structures and their
  operating principles
• Import new experts in risk management and
  bioethics
• Improve the mechanisms of self-regulation
  (British Biotech, DNA tests and insurance, ethics
  committees)

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• Conclusions
• Pluralistic governance
• Incorporating the irrational hysterical
• Negotiation not control of the political
  discourse
• A slower rate of political decision making
• More sustainable outcomes

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The Politics of Human Genetics Brian
Salter Mavis Jones