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Actant Stories and the Australian Xenotransplantation Network

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Actant Stories and the Australian Xenotransplantation Network Constructing and Fracturing Alliances: Actant Stories and the Australian Xenotransplantation Network Copyright - Neil Leslie, Wellcome Images; reproduced with permission Peta S. Cook BPhoto; BSocSc (Sociol.) (hons.) Humanities Research Program Queensland University of Technology Submitted in full requirement for the degree of Doctor of Philosophy 2008 “The XWP [Xenotransplantation Working Party] agree that, in retrospect, a sociologist would have been a useful addition to the group to help understand these issues” (Xenotransplantation Working Party 2004: 14, emphasis added). - i - Keywords sociology; xenotransplantation; transplantation; allotransplantation; actor-network theory; science and technology studies; public understanding of science (PUS); critical public understanding of science (critical PUS); scientific knowledge; public consultation; risk; animals - ii - Abstract Xenotransplantation (XTP; animal-to-human transplantation) is a controversial technology of contemporary scientific, medical, ethical and social debate in Australia and internationally. The complexities of XTP encompass immunology, immunosuppression, physiology, technology (genetic engineering and cloning), microbiology, and animal/human relations. As a result of these controversies, the National Health and Medical Research Council (NHMRC), Australia, formed the Xenotransplantation Working Party (XWP) in 2001. The XWP was designed to advise the NHMRC on XTP, if and how it should proceed in Australia, and to provide draft regulatory guidelines. During the period 2001-2004, the XWP produced three publicly available documents one of which, ‘Animal-to-Human Transplantation Research: A Guide for the Community’ (2003), was specifically designed to introduce the general public to the major issues and background of XTP. This thesis examines XTP in Australia as guided and influenced by this community document. Explicitly, drawing upon actor (actant)- network theory, I will reveal the Australian XTP network and explore, describe and explain XTP problematisations and network negotiations by the enrolled actants on two key concepts and obligatory passage points - animals and risk. These actants include those providing regulatory advice (members of the XWP and the associated Animal Issues Subcommittee), those developing and/or critiquing XTP (official science and scientists), and those targeted by the technology (people on dialysis, with Type-1 diabetes, Huntington’s disease, Parkinson’s disease, pre-or post-human-to- human transplantation, and their partner/spouse). The stories are gathered through focus groups, semi-structured interviews and document analysis. They reveal ambiguous and sometimes contradictory stories about animals and risk, which influence and impact the problematisations of XTP and its networks. Therefore, XTP mobilises tension; facilitating both support and apprehension of the XTP network and its construction by both the sciences and the publics. - iii - Publications and Conference Presentations Publications (related to this thesis) Cook, P.S. 2007. ‘Informed consent and human rights: Some regulatory challenges of xenotransplantation’, Social Alternatives, 26 (4): 29-34. Cook, P.S. 2006. ‘Science Stories: Selecting the Source Animal for Xenotransplantation’ in Hopkinson, C. and Hall, C. ed. Social Change in the 21st Century 2006 Conference Proceedings, Centre for Social Change Research, School of Humanities and Human Services, Queensland University of Technology, Brisbane, Australia, December 2006. ISBN: 1-74107-129-1; http://eprints.qut.edu.au/archive/00006895/01/6895.pdf Cook, P.S., Kendall, G., Michael, M. and Brown, N. 2005. ‘Xenotourism and Xenotravel: Some notes on global regulation’ in Bailey, C. and Barnett, K. eds. Social Change in the 21st Century 2005 Conference Proceedings, Centre for Social Change Research, School of Humanities and Human Services, Queensland University of Technology, Brisbane, Australia, December 2005. ISBN: 1-74107-1089; http://eprints.qut.edu.au/archive/00003396/01/3396.pdf Cook, P.S. 2005. ‘Human Rights and Globalizing Technology: The Case of Xenotransplantation and Xenotourism’ in Davenport, S., Doolin, B., Leitch, S. Motion, J., Daellenach, U. and Lum, S. eds. Talking Biotechnology Conference 2005, Victoria Management School, Victoria University of Wellington, Wellington, New Zealand, December 2005. CD-ROM. ISBN: 0-475-12279-8. Cook, P.S. 2005. ‘Medical Marginalisation of Aboriginal Australians: Renal Transplantation and Xenotransplantation’ in Julian, R., Rottier, R. and White, R. eds. The Australian Sociological Association 2005 Annual Conference, University of Tasmania, Sandy Bay campus, Hobart, Australia, December 2005. CD-ROM. ISBN: 0-9598460-5-0 - iv - Conference Presentations (related to this thesis) Cook, P.S. 2008. ‘“We’ve got enough problems”: Subjective understandings of infectious risk in xenotransplantation’, Acting with Science, Technology and Medicine, Society for the Social Studies of Science (4S)/European Association for the Study of Science and Technology (EASST) 2008, Erasmus University, Rotterdam, the Netherlands, 20th-23rd August 2008 Cook, P.S. 2007. ‘Why Pigs? Science Stories on Animals in Xenotransplantation’, Animals and Society II: Considering Animals, Animals and Society Study Group, Old Woolstore, Hobart, Tasmania, Australia, 3rd-6th July, 2007 Cook, P.S. 2006. ‘Animals in Xenotransplantation’, Implications and Implementations: The Meaning and Use of our Research, Colloquium 10 of the Post Graduate Forum on Genetics and Society (PFGS), University of York, York, U.K., 30th August - 1st September 2006 Cook, P.S. 2006. ‘Overcoming and Reinforcing Dichotomies: The Animal/Human Divide and Xenotransplantation’, Reviewing Humanness: Bodies, Technologies and Spaces, European Association for the Study of Science and Technology (EASST) 2006, University of Lausanne, Lausanne, Switzerland, 23rd-26th August 2006 Cook, P.S. 2006. ‘Xenotransplantation and the Fragility of Human Rights’, Life, Death and Human Nature: Bioethics and Biolaw in the Twenty-First Century, ABA/ANZHILE 2006, Queensland University of Technology, Faculty of Law, Brisbane, Australia, 5th-8th July 2006 Cook, P.S. 2006. ‘Challenges and Hurdles for Xenotransplantation Regulation in Australia’, Immunology and Cell Biology, 84 (suppl.) Abstracts from the TSANZ 24th Annual Scientific Meeting, Australian Academy of Science, Canberra ACT, 29th-31st March 2006 - v - Table of Contents Keywords ii Abstract iii Publications and Conference Presentations iv Table of Contents vi List of Figures ix List of Research Participants xi Glossary and Abbreviations xiii Statement of Original Authorship xxiii Acknowledgements xxiv 1 - Constructing and Fracturing Alliances: An Introduction 1 2 - Xeno-what? A Literature Review 9 Introduction 9 Xenotransplantation 10 What? 10 Why? 17 Examples? 28 Case 1: Baby Fae, 1984 29 Case 2: Jeff Getty, 1995 31 1) Main Points 33 How? The Concerns of Xenotransplantation 34 Immunological Barriers and Solutions to Organ Rejection 35 Immunosuppression and Allotransplantation: Infection, Side Effects and Psychology 42 2) Main Points 49 Physiology and Genetic Engineering 50 Microbiology: Zoonosis and Xenozoonosis 53 3) Main Points 68 Sociocultural Research: Quantitative and Qualitative 69 Quantitative Research 69 Qualitative Research 75 4) Main Points 94 Sociology of Animals 95 Conclusion 104 3 - Entering the Network: Methodology 106 Actor (actant)-Network Theory 106 Translation 111 Problematisation 111 Interessement 112 Enrolment 113 The Three Basic Tenets: Generalised Agnosticism, Generalised Symmetry and Free Association 114 The Australian Xenotransplantation Network 119 Methodological Praxis 140 Document Analysis 140 - vi - Focus Groups 145 Semi-Structured Interviews 147 Enrolling the Research Participants (Actants) 150 4 - The Biological Gaze: Selecting an Animal 158 Introduction 158 Animal Choice by Official Science 161 The Comparative Continuum 164 The Problematisation of Nonhuman Primates 169 The Problematisation of Pigs 181 Animals by Animals? 195 Animal Choice by the Research Participants 201 Conclusion 208 5 - The Sociozoologic Gaze: Using Animals 211 Introduction 211 The Sociozoologic Scale 213 Animal Use by Official Science and the Research Participants 215 Tools - Meat and Science 216 Problematisation - Equivalence of Process: Official Science 216 Problematisation - Differentiations of Purpose: Official Science 218 Problematisation - Equivalence of Process: Research Participants 221 Problematisation - Differentiations of Process and Purpose: Research Participants 226 Vegetarianism 235 Tools – Breeding 242 Pets 251 Conclusion 258 6 - Risk and Trust: Science, Infection and Health 262 Introduction 262 Science and Xenozoonosis 264 PERV and the PERV Network 266 Risk, Trust and the Everyday 278 Medical and Infectious Risks 283 Risk, Altruism and the Value of Life 291 Conclusion 306 7 - Risk and Uncertainty: Science and Zoonosis 310 Introduction 310 Scientific Uncertainty 311 Peter Collignon 317 Zoonoses and Avian Influenza 320 Problematisation - Zoonoses: History and the Present 320 Problematisation - Zoonoses: Management by Humans 323 Problematisation - Zoonoses: Human Knowledge 324 Xenotransplantation Working Party and the - vii - Animal Issues Subcommittee 334 Safety and Future Generations 337 Conclusion 342 8 – A Story in Progress: A Conclusion 344 Appendices 358 Appendices 1.0 to 1.3 – History of Xenotransplantation 358 Appendices 2.0 to 2.2 – Quantitative Social Research on Xenotransplantation 362 Appendices
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