Xenotransplantation

Risk Identities and the Human/Nonhuman Interface

Supported by the Economic and Social Research Council (award: L218 25 2044)

Period of Study: Jan 2001 - June 2003

Research personnel: Dr Mike Michael & Dr Nik Brown

Research Administrator: Gillian Robinson

Expert Consultant: Prof. Robin Weiss

Abstract of the Project

Project Update (Oct 2002)

Publications

Presentations

Feb 2003 Workshop - Expectations in Transplant Innovation

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This research examines how the risks and opportunities associated with xenotransplantation (XTP – use of nonhuman cells and organs in human transplantation) are negotiated between different constituencies. This process of negotiation can be seen to reflect and mediate changing formulations of the contemporary human/nonhuman interface. Xenotransplants are illustrative of much wider social questions about the regulation of transpecies disease risks, animal experimentation and new biological innovation. Four analytical themes inform the research. The first theme examines the dynamics of debate within expert networks (in such areas as immunology and virology, for example). Theme two, examines the basis of distinctions between ‘public’ and ‘expert’ discourse, including representations of experts by publics and visa-versa. The third theme analyses the temporal dynamics of risk including differences in the time frames of risk between different groups. Finally, the research will examine underlying models of regulatory governance present in the policy management of xenotransplantation.

Brown, N. & Webster, A. (forthcoming) New Medical Technologies and Society: Reordering Life, Cambridge, Polity Press

Brown, N. & Michael, M. (2003) A Sociology of Expectations: Retrospecting Prospects and Prospecting Retro-spects, Technology Analysis and Strategic Development, 15, 1, 3-18

Brown, N (2003) Containing Contradictions: Debating Na-ture, Controversy and Biotechnology, forthcoming in Peter Glasner (ed) Reconfiguring Nature: Issues and Debates in the New Genetics, Ashgate

Brown, N. & Michael, M. (2002) From Authority to Authen-ticity: The Performance of Transparency in Biotechnology, Health, Risk and Society, 4, 3, 259-273

Michael, M. (2002). Animals, publics and identities: uncer-tainty, ambivalence and policy making. In H. Von Troil (Ed). Transgenic Animals in Medicine. Report of the semi-nar, 8-10 October 2000 (p.4). European Federation of Biotechnolog/Task Group on Public Perceptions of Bio-technology.

Nik Brown and Michael, M. (2001) Transgenics, Uncer-tainty and Public Credibility. Transgenic Research, 10,4, 279-293.

Michael, M. (2001) Technoscientific Bespoking: Animals, Publics and The New Genetics, New Genetics and Society, 20, 3, 205-224

Nik Brown and Michael, M. (2001) Switching Between Science and Culture in Transpecies Transplantation. Sci-ence, Technology and Human Values, 26, 1, 3-22 .

Michael, M. & Brown, N. (12th April 2003) Dystopias and dystropias: Futures and performativities in xenotransplantation, British Sociological Association Annual Conference, University of York.

Brown, N. & Michael, M. (Sept 18 2002) Transparency - the very idea. From authority to authenticity, Keynote address at the Royal Society of Arts (Transparency and Corporate Governance), London.

Brown, N. & Michael, M (Aug 2002) The Sociology of expectations (with Mike Michael), European Association for the Study of Science and Technology, University of York

Michael, M. & Brown, N. (Aug 2002) From Authority to Authenticity in biotechnical governance (with Mike Michael), European Association for the Study of Science and Technology, University of York

Michael, M. & Brown, N. (25-26 March 2002) Being and Becoming in xenotransplantation: Health, Politics and the 'Parahuman', British Sociological Association conference, Reshaping the Social,

Brown, N. and Michael, M. (Nov 1-4, 2001) Regulating species boundaries. Conference of Society for Social Studies of Science: Fashioning the Future. Camb, Mass. US.

Brown, N. (Sept, 2001) Xenotranspantation: Risk Identities and the Human / Nonhuman Interface. Seminar at the Dept Geography, UCL.

Michael, M. (Sept 2001) Communicating Genes: From 'Science to Society' to 'Ethno-Epistemics'. Keynote speech at Communicating Health and New Genetics, Department of Information Studies, Abo Akademi, Turku. 17-18 Sept.

Brown, N. (Jan 2001) Risk, Species Identity and Boundary Change. Seminar Series of CRICT (ESRC Centre for Research on Innovation and Competition. University of Manchester and UMIST

Brown, N. (Nov, 2000) Risk Identities and the Human/Nonhuman Interface. Seminar Series of the BIOS Group at Goldsmiths College (UCL)

Expectations in Transplant Innovation - Workshop Report

The seminar was designed to bring together several recent social science assessments of new innovative approaches to transplantation technology, focussing explicitly on questions of differing expectations in the area.

Xenotransplantation, stem cells and other innovative approaches to transplantation reflect contrasting expectations about the future of transplantation. Claims for the promise and potential of many of these fields are often highly contentious, appearing to be both necessary for reducing future uncertainty, but costly when the future unfolds in unanticipated ways. On the one hand, 'talking up' the promise of an innovation is important for attracting investment, for allaying risk and even receiving regulatory approval for trial studies involving both patients and animals. And yet, inflated expectations can be a painful source of frustration and disappointment for key stakeholders, particularly potential patients.

This workshop asked:
· What are the current expectations surrounding innovative transplant research and how have these expectations changed over time?
· What differing role do expectations play across key stakeholders including, patients, clinicians, research teams, investors, policy makers and NGOs?
· Who is responsible for the authorship of expectations?
· Who wins and who loses as these debates are played out in the innovative health technology environment? What are the costs / risks?

The seminar reported on a number of social science research projects, principally:

Xenotransplantation: risk identities and the human nonhuman interface
(supported by the Economic and Social Research Council) - Mike Michael & Nik Brown

Deliberative Mapping: citizens and specialists informing decisions on organ transplant options (supported by the Wellcome Trust) - Jacquie Burgess, Gail Davis, Malcolm Eames, Suzanne Williamson, Andy Stirling and Sue Meyer

12.45 - 13.30 Lunch

13.30 - 13.45 Dr Mike Michael (Sociology, University of London) Introduction

13.45 - 14.30 Dr Nik Brown (Sociology, University of York) ESRC research on xenotransplantation & risk (plus 20min discussion)

14.30 - 15.15 Dr Gail Davies, Dr Suzanne Williamson (Geography, UCL) and Dr Malcolm Eames (PSI) Wellcome Trust research on decision-making on organ transplant options (plus 20min discussion)

15.15 - 15.30 Break

15.30 - 16.15 Dr Paul Martin (University of Nottingham)Discussant: Expectations in biomedical innovation (plus 20min discussion)

16.15 - 16.30 Prof. Andrew Webster (Director of the Innovative Health Technologies Programme, ESRC) Concluding remarks

Speakers and Participants included:

Richard Ashcroft - Senior Lecturer in Medical Ethics, Imperial College
Nik Brown - Deputy Director of SATSU, Sociology, University of York
Anne-Marie Campbell - Secretariat to the United Kingdom Xenotransplantation Interim Regulatory Authority, Department of Health.
Peter Doyle - Senior Medical Officer to the Department of Health's Transplant Team
Gail Davies - Lecturer in Geography, UCL
Malcolm Eames - Research Fellow, Policy Studies Institute
Simon Festing - Director of the Association for Medical Research Charities
Alasdair Kent - Director Genetics Interest Group
Natasha Lane - Scientific officer, Research animals division, RSPCA
Gareth Lloyd-Jones - Director of Research, Smith & Nephew
Paul Martin - Institute for the Study of Genetics, Biorisk and Society, University of Nottingham
Robert Meadowcroft - Director, Parkinson's Disease Society
Mike Michael - Head of Sociology, Goldsmith's College, University of London
Michael Reiss - Professor of Science Education, Institute of Education, University of London
Jacqui Russell - Parliamentary Office for Science and Technology
Andrew Webster - Professor in Sociology and Programme Director, Innovative Health Technologies Programme (ESRC), University of York
Suzanne Williamson - Geography, UCL

Please feel free to comment on the project by forwarding your message to the moderated Nik Brown. We particularly welcome messages from interview respondents and discussion group participants.

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Dr Mike Michael

Department of Sociology, Goldsmith's College, University of London, SE14 6NW, +44 (0)207 919 7706 m.michael@gold.ac.uk

Dr Nik Brown

Science and Technology Studies Unit, Department of Sociology, University of York, YO10 5DD, +44 (0)1904 434741 ngfb1@york.ac.uk

Gillian Robinson (admin)

Science and Technology Studies Unit, Department of Sociology, University of York, YO10 5DD+44 (0)1904 432630