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The Politics of Human Genetics

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Nuffield Council on Bioethics, Genetics & human behaviour: the ethical context (2001) ... Import new experts' in risk management and bioethics ... – PowerPoint PPT presentation

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Title: The Politics of Human Genetics


1
The Politics of Human Genetics Brian
Salter Mavis Jones
2
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.
3
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.

4
  • Method
  • Documentary analysis
  • Media monitoring
  • Interviews (95)
  • Largely UK , some EU and US

5
  • 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

6
  • The political problem of governance
  • Tension between scientific ambition, industrial
    need and the public interest
  • Governance, trust and legitimacy

7
  • 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

8
The politics of the governance of biotechnology
9
The formal governance of human genetics
HFEA
CSM
The Human Genetics Commission
GAIC
UKXIRA
GTAC
10
  • Whats not working?
  • Movement from a closed to an open policy
    community of governance is painful
  • Policy networks are embryonic
  • Political culture is divided

11
  • 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

12
  • 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

13
  • 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

14
  • 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)

15
The politics of the governance of biotechnology
16
  • The role of the media

17
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


18
Research question What role does the media play
in human genetics policy networks?
19
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

20
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)
21
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

22
The media as a broker in an emerging global
public policy network human genetics
23
  • 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)

24
  • Conclusions
  • Pluralistic governance
  • Incorporating the irrational hysterical
  • Negotiation not control of the political
    discourse
  • A slower rate of political decision making
  • More sustainable outcomes

25
The Politics of Human Genetics Brian
Salter Mavis Jones
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