1. ESRC Genomics Network (archive)
  2. Gengage
  3. The Human Genre Project

Cesagen · Research

The Emerging Politics of Human Genetic Technologies

Ian Welsh

Start date

2004-04-01

Affiliated staff

Alex Plows, Robert Evans

Background

This 3 year project was concerned with public engagement and new genetic technologies. The work was predominantly UK focused, with attention also paid to EU regulatory developments and European actors. Focusing on human applications, the project mapped the social dynamics of emerging public responses to this high profile science project, identifying core areas of interest and concern as expressed by different publics in relation to a broad variety of issues and themes. ‘Publics’ are here defined as civil society in its broadest.

Aims

To ‘map’ and sample UK public engagement with medical applications of new genetic technologies within civil society, and produce an anatomy of emerging networks. The project set out to identify both the underlying social dynamics of emerging public responses and key areas of engagement and concern. The project thus produced an anatomy of engagement in terms relevant to knowledge production within the bio-economy, policy making and citizen groups by revealing embedded frames, discourses and actions constitutive of a ‘proto-politics’. To achieve this, the project provided overviews of:
  • Producers of genomic techniques, including scientists, clinicians and administrators in both private and public sectors
  • Regulators of genomic techniques, at local, regional, national, European and global levels, but with a primary focus on UK and European institutions
  • Engagement with genomic techniques by Social Movement Organisations, emergent social movements, key ‘prime movers’ with the potential to influence the reception of medical genomics within the public sphere.

Methods

The research was primarily qualitative in nature, drawing on documentary and interview data and case study 'participant observation', both online and at specific sites and events. The first phase of the project comprised a broad overview of this complex field, via a review of websites, document outputs and other literature through which core scientific and technological developments, and key regulatory, scientific and ethical/social issues, were identified and 'prime movers' (McAdam 1988) and 'early risers' (Tarrow 1998) in civil society mapped. Interviews were conducted with samples of 'prime movers', in particular amongst NGO and social movement actors, who have been the ethnographic focus of the project. Overall, a broad range of public engagement events, both self-initiated by civil society groups, and initiated by policy processes, have been attended by the research team as part of a symbiotic process of participant observation and knowledge transfer. These modes of engagement have included policy and protest events. The second stage of data collection involved focusing on a primary ethnographic site: case study work mapping interactions, and emergent capacity-building, amongst network clusters of core 'oppositional'/ critical actor groups, namely disability rights, social justice, environmental and 'anti globalisation' actors and associated 'watchdog' NGOs such as Human Genetics Alert. Ethnographic 'trails' have been traced out to Europe, Canada and America. Interactions between these groups and other social actors (eg regulators, scientists, other 'interest groups' such as faith groups) have also been mapped.

Findings

The project identified a diverse range of publics engaging with both particular genomic techniques and the associated wider social stakes. These include disability rights and social justice activists, patients, and scientific workers, actively engaged in sense making efforts relating to the ‘new genetics’. Prominent areas here include patenting, stem cell development, diagnostic and screening techniques.These multiple publics are engaged in such meaning construction in the face of a rapidly developing techno-scientific field, with multiple applications embodying a diverse range of technical, moral, ethical and social stakes.The cross-cutting nature of genomic techniques makes boundary definition, and maintenance between types of genomic science (e.g. ‘green’ agricultural and ‘red’ medical’), and the allocation of specific techniques (e.g. ‘reproductive’, ‘therapeutic’ and ‘enhancement’), to categories within such boundaries difficult. Blurred boundaries produce significant challenges to established Social Movement Organisations in terms of engagement.Specialised actors such as Genewatch become key resources and nodes within networks. Networked participants are diffusing information and perspectives, utilising a number of tactics including policy engagement, extending across Europe and beyond into global forums.These initial engagements are characterised by a high degree of ambivalence and are consistent with the identification of stakes associated with latency periods within which publics ‘digest’ complexity in a process of emergence.Beyond some clearly positioned actors (e.g. animal rights groups) there are few clearly defined ‘pro’ and ‘anti’ stances. The process of emergence is producing a number of counter-intuitive actor clusters. Examples of such ‘strange bedfellow’ clusters include those around patenting and egg donation.

Publications

Evans, R. and Plows, A. (2007) ‘Listening Without Prejudice? Re-Discovering the Value of the Disinterested Citizen’, Social Studies of Science, 37: 6 pp. 827-853Welsh, I., Evans, R. and Plows, A. (2007) ‘Another Science for Another World? Science and Genomics at the London European Social Forum’ Working Paper 70, Cardiff School of Social Sciences, Cardiff University. http://www.cardiff.ac.uk/socsi/resources/wrkgpaper-70.pdfEvans, R., Plows, A. & Welsh, I. (2007) ‘Towards an anatomy of public engagement with medical genetics’, in Paul Atkinson & Peter Glasner (Eds) New Genetics, New Identities. London, Routledge.Plows, A. and Boddington, P. (2007) ‘Troubles with Biocitizenship?’ in Genomics, Society and Policy, 2: 3Welsh, I. and Chesters, G. (2005). 'Complexity and Social Movement: Process and Emergence in Planetary Action Systems', Theory Culture and Society, 11,2, pp.187-211

Welsh, I. (2004) 'The Political Economy of Fraud in a Globalised Industry: the case of seafarers' certifications' Sociological Review, 52, 3: 297-313

Further information

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