The Governance Of Human Genetics: The Politics Of Public Trust
Abstract
The aim of the project is to analyse the ability of the new advisory and regulatory framework for biotechnology to respond to issues of public trust in the field of human genetics. Placing the UK's governance system for biotechnology within an international context, and building on the principal applicant's work on the governance of medicine, the research will employ the techniques of public policy analysis to examine the changing relationship between the regulatory bodies of the state, the public and the media. Data will be collected from documentary and internet sources, interviews and non-participant observation to provide a rich test bed for the project's hypotheses. As the policy implications of the research emerge, they will be refined and disseminated through the project's advisory committee, workshops and the internet.
Summary
Background
The pace of change in biotechnology in general and the field of human
genetics in particular is placing the governance machinery under considerable
strain as it attempts to deal with the consequent political and economic
pressures. As the 1999 Review of biotechnology regulation clearly recognised,
following as it did hard on the heels of the controversy over GM foods and
GM crops, public trust in both the field of genetics itself and its institutions
of governance is problematic. Since then, the events surrounding BSE, GM
animals and human embryo research, the continuing and widespread media interest,
and the emergence of a range of lobby groups have ensured that, for the
foreseeable future, the politicisation of the field is here to stay.
The reforms are intended to ensure the legitimacy of biotechnology in the
eyes of the public and to enable the UK to benefit economically from a lead
position its global development. The technical and strategic functions of
biotechnology governance have been reorganised under the purview of the
Human Genetics Commission, the Food Standards Agency and the Agriculture
and Environment Biotechnology Commission. In introducing these reforms,
the government's view is that it is important that the regulatory system
should not place unnecessary burdens on the industry or barriers to its
development. Too much regulation can stifle business initiative and inward
investment. Yet too little, or the wrong kind, can undermine public confidence.
The burden of governance is to manage the tension between the political
and economic imperatives.
The aim of the project is to assess the ability of the new advisory and
regulatory framework 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.
Research Design
Over a two year period, data will be gathered from regulatory bodies, consumer groups and the media drawing on a range of sources: documentary evidence, the internet, and interviews with key players in this complex political arena. Having sketched out the major governance issues with the documentary and internet data, the interviews will be employed to probe further into the way in which the networks between government, consumers and media interact as those issues ebb and flow. As the results emerge, so their analysis will be tested through workshops with the main stakeholders.
Policy and Academic Implications
In researching the governance and public trust relationship, this project will contribute to the Programme's concerns with an international perspective on regulatory regimes, the involvement of a wider range of constituencies in governance policy, specific mechanisms for public inclusion throughout the process of policy formation and implementation in the governance field and the role of the media in that process.
Contacts
Outputs
Research Findings
Findings are available here - pdf
Working Papers
March 2004 Divided Policy
Community and Excluded Policy Networks: the Case of Human Genetics Regulation
- pdf
Books
B. Salter, The New Politics of Medicine, Palgrave, Basingstoke, 2004
Journal Papers
Salter, S & Jones, M (in press) 'Change in the policy community of
human genetics: a pragmatic approach to open governance', 'Policy and Politics
A copy is available to view here
- pdf
Salter, B (in press) 'Transnational governance and cultural politics: the
case of human embryonic stem cells and the European Union's Sixth Framework
Programme'
A copy is available to view here
- pdf
Salter, B (in press) 'Biobanks and bioethics: the politics of legitimation',
European Journal of Public Policy
A copy is available to view here
Frewer, L.J. and Salter, B (in press) 'Societal trust in risk analysis: implications for the interface of risk assessment and risk management'. in Earle, T. and Siegrist, M. Societal trust and risk management, Earthscan, London
Frewer LJ and Salter B (in press) 'The changing governance of biotechnology: the politics of public trust and the agri-food sector'. Applied Biotechnology, Food Science and Policy
Salter, B; Frewer, L. Public Attitudes, Scientific Advice and the Politics of Regulatory Policy: the Case of BSE. Science and Public Policy. August. 2001.
Salter, B; Frewer, L. Governance of Biotechnology: the Politics of Public Trust. Science, Technology & Human Values. 2001.
Salter, B; Smith, . The U.K. Stake in the Biotechnology Debate: Global Competition & Regulatory Politics.
Jones, M; Salter, B. The Policy Discourse of Governance: the Case of Human Genetics. New Genetics & Society. 2001.
Salter, B; Jones, M. [A planned but untitled paper elucidating the policy model underlying our theoretical framework]. Health, Risk & Society. 2001.
Conference Papers
Salter, B; Smith, . (Oral) The UK's Stake in the EU Biotechnology Debate. ECPR. 2001, University of Kent at Canterbury.
Jones, M. (Oral) Governance of Genetic Technologies, Policy Discourses and Public Trust. Postgrad. Forum on Genetics & Society. Fifth Colloquium, 2001, University of Nottingham.
Salter, B. (Oral) The Politics of the Governance of Human Genetics. Soc. Dynamics of Controversy & Control in Biosci.. 2001, Brunel University. ESRC Seminar Series.
News
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