Mapping deliberation: calculation, articulation and intervention in the politics of organ transplantation

Abstract

This paper reflects on the aims and outcomes of an innovative methodology of participatory technology appraisal, called Deliberative Mapping, which seeks to contribute to theoretical debates and practical experimentation around what it might mean to bring the technosciences into democracy. Deliberative Mapping is a hybrid methodology, involving both calculative and deliberative processes, which seeks to map the entanglements of biotechnological imbroglios, and translate these connections into the contexts of decision-making. Through application to the case study of organ transplantation, these procedures of calculation and articulation are critically examined, exploring their aim to reduce asymmetries between scientific, political, economic and other framings of the issue and their operation in contexts already complexly structured through existing power relations, which indicate the challenge of co-fabricating these experimental forms of intervention into political facts.

Keywords:

• Deliberative Mapping
• organ transplantation
• public participation
• calculation
• articulation
• intervention

This paper is a personal reflection on an interdisciplinary and collaborative process. The Deliberative Mapping (DM) process was developed by Andy Stirling, Sue Mayer, Kristina Staley (SPRU University of Sussex), Gail Davies, Jacquie Burgess and Suzanne Williamson (Geography, University College London) and Malcolm Eames (The Policy Studies Institute). It was supported by a grant from the Wellcome Trust's innovative methods in public consultation programme (ref: 064492/B/01/CM/CD/SW). Jacquie Burgess, Suzanne Williamson and Kristina Staley also worked on developing and facilitating the citizens’ panels; Andy Stirling, Malcolm Eames and Sue Mayer undertook the specialist strand of the Deliberative Mapping process. We are indebted to everyone from the London Borough of Camden and the transplantation community who joined in this experimentation with us and made this research possible. A preliminary version of this paper was presented at the ‘Reconstituting Nature’ workshop at the Open University in December 2004. I would like to thank Steve Hinchliffe and Nick Bingham for the invitation to take part in the workshop, and all participants for their probing questions and valuable contributions. I would also like to thank the reviewers and editorial board of Economy and Society for their critical, supportive and constructive comments.

Notes

1. The pilot process centred on evaluation of six core options defined through a process of stakeholder consultation for addressing the shortfall of organs for transplantation. Four ‘prompted options’ could also be appraised if participants wished: improved kidney machines, adult stem cells, rewarded giving and accepting death or palliative care. Specialist participants were invited to define unlimited further options.

2. The specialists represented a wide variety of expertise and professional competencies and included the following: a manager for a medical equipment supplier; a professor of biomedical science from Sheffield University; a transplantation business manager for a pharmaceutical company; an ethnic health development manager from the NHS Regional Executive; a senior medical officer from the Department of Health; the director of an institute of complementary medicine; a medical ethicist from the British Medical Association; a professor of clinical sciences from Guy's Medical School; a health economist from NICE; a professor of applied philosophy from Lancaster University; the National Secretary of the Guild of Catholic Doctors; a manager of a xenotransplantation company; a professor of nephrology from University College Medical School; a kidney transplant patient from Middlesex Hospital; the Director of UK Transplant; a research director from Compassion in World Farming and a director of public health from an NHS primary care trust. The twelve men and five women were recruited through a process of stakeholder review and snowballing, overseen by the Project Advisory Committee.

3. The citizen strand of the DM process involved four citizen panels of eight to ten members, held in the London Borough of Camden between April and July 2002. Thirty-four citizens were recruited by stratified sampling using a questionnaire administered by a specialist recruitment agency. The key principle in constituting the panels was to create a supportive environment for members to undertake the challenging assessment tasks, so the four panels were differentiated by gender and socio-economic class. Previous experience of working with in-depth groups indicated the difficulty of incorporating diverse educational experiences in discussions of science and technology issues (Burgess et al. 1998a; Harrison et al. 1996), so socio-economic status was used as a proxy to divide the groups on this basis. Existing literatures also suggest that single gendered panels may be preferable when dealing with sensitive medical issues (Wellcome Trust 1998). Furthermore, although still a poorly researched issue, there is evidence to suggest that gender plays an important role in accounting for differences in risk perception and assessment (Kerr et al. 1998). In recruiting for each panel, further criteria were drawn up to reflect the ethnic diversity within the Borough of Camden, where the proportion of people from non-white ethnic groups is currently 20 per cent, with additional weight given to recruiting a mix of age groups and participants with and without children.

4. For example, increasingly critical questions are being asked of the citizen jury process. Smith and Wales (2000) explore the claims for representativeness and inclusiveness in the recruitment of jurors and in the conduct of the jury's business. They highlight the danger of a ‘false essentialism’ in the sense that selecting individuals on the basis of their socio-economic position can lead to an assumption that this one individual can somehow speak for all with a similar social position. There are also doubts about the quality of the private deliberations between the jurors as they work with the moderator towards their decision. Some ex-jurors report that the moderators ‘push for consensus among the jurors at the expense of allowing participants to understand and work through their differences’ (Smith and Wales 2000: 59).

Additional information

Notes on contributors

Gail Davies

Gail Davies is Lecturer in Human Geography at University College London. Her research interests are in the spatial, institutional and embodied aspects of knowledge practices, particularly the relationship between scientific understandings and vernacular knowledges. Much of this work has focused on animals, as a way of linking diverse empirical contexts, from natural history filmmaking to public debate about transgenic animals, to broader questions about the changing relations between ideas of nature, ethics and expertise