FACULTY OF ARTS AND PHILOSOPHY PIG TALES, HUMAN CHIMERAS AND MAN-MADE PUBLIC HEALTH HAZARDS AN ETHICAL ANALYSIS OF XENOTRANSPLANT BENEFITS AND RISKS by AN RAVELINGIEN DISSERTATION SUBMITTED IN FULFILMENT OF THE DEGREE OF DOCTOR OF PHILOSOPHY AT GHENT UNIVERSITY (June, 2006) SUPERVISOR CO-SUPERVISORS Prof. Dr. JOHAN BRAECKMAN Prof. Dr. ILSE KERREMANS Prof. Dr. ERIC MORTIER Prof. Dr. FREDDY MORTIER {Title page: The illustration is an adaptation of the embryo drawings drawn by Ernst Haeckel in 1866 for his Recapitulation Theory} Acknowledgements The process of writing this dissertation has been nothing short of a growing experience. It has allowed for a gradual transition from student life to ‘reality’, while giving me the opportunity to further extend the roots of my education and main interests. I want to thank the Flemish Fund for Scientific Research for the financial support of this research project, which has introduced me to new ideas, new people and new parts of the world. Of course, there would not have been a project had Johan Braeckman not encouraged me to apply for a grant to begin with. Johan has witnessed my ‘growth process’ (as well as the growing pains that have accompanied it) and I am deeply indebted to him for his active belief in my work as well as for the continuous support, encouragement and constructive criticism. It seems that nothing was too much to ask him. Despite his busy schedule, he never resisted reading, rereading and commenting on my papers. His dedication to ethics and philosophy is sincere, inspiring and fun (indeed, what would philosophy be without Cosmo Kramer?). Johan has given me advice on just about anything you could ever possibly need advice on, and for that, I consider him a mentor and a dear friend. I am also extremely grateful to the other supervisors of this project. Ilse Kerremans’ experiences as a transplant surgeon made the urgency of dealing with the organ shortage more tangible for me. I admire her courage to fight death on a daily basis. The same respect is due to Eric Mortier. His expertise as an anaesthesiologist and his genuine interest in philosophy allowed for fascinating discussions on the meaning and definition of death. I also appreciate the support of Freddy Mortier. His activities as our dean are demanding. Nonetheless, he has always taken the time to discuss the progress of my work, which provided some valuable insights and observations. I am especially grateful towards David Cooper, who has been receiving emails from me during the past three and a half years. He is a renowned scientist and pioneer in xenotransplantation, and takes a leading role in thinking about and acting upon the ethical and social implications of this emerging biotechnology. I am honoured that he is willing to judge my work. I also want to acknowledge the many colleagues who have helped me develop some of the thoughts expressed in this dissertation. I thank Gunter Bombaerts, Charlotte De Backer, Jelle De Schrijver, Farah Focquaert, Koen Margodt, Karolien Poels, Tom Speelman, Griet Vandermassen and Thomas Vervisch for the cake and discussions during sporadic meetings of the Braeckie Basement Team. Special thanks to Koen Margodt and Frank Mertens for i sharing some of their material, which was useful in two papers. Thanks also to Tom Claes, Guido Pennings, Sigrid Sterckx and Ann Van Soom for their generous advice on the outline of this research. A very warm thank you to the colleagues and friends that have volunteered their time to read, correct and comment on some of the texts during the final stages of writing: Charlotte, Griet, Katrien Devolder, Melinda Frank, Nell Grillaert, Mike Legge, Malcolm McGinn, Kevin McMullan, Jeroen Moernaut, Els Ravelingien and Linda Scobie. I am indebted to Anja Demeulenaere for administrative and practical support and to Katia Brys for her professional support in proofreading and layout. My encounters abroad have been very instructive as well. I am grateful to Arthur Caplan, Sheldon Zink and the assistant researchers at the University of Pennsylvania Bioethics Center for the fruitful discussions and access to their library and documentation. Special thanks to Renée Fox for sharing her 55 years of intriguing experience in transplantation sociology and bioethics with me. Thanks also to Grant Gillett, Donald Evans, Mike King and Claire Gallop for discussing some of my papers and allowing me to attend the Medical Ethics courses at the Otago University Bioethics Centre. I have also had a brief introduction in Australian philosophy. I am extremely grateful to Robert Sparrow and Neil Levy for making my stay at Monash and Melbourne University possible and so thoroughly enjoyable. Along with them, I thank Steven Curry, Heather Draper and Janna Thompson for the constructive criticism of some of the arguments presented in this thesis. I have also learned a great deal from meetings with members of the World Transhumanist Association and the Institute for Ethics and Emerging Technologies. Particular thanks to Nik Bostrom, James Hughes, Giulio Prisco and Martine Rothblatt for the thought-provoking conversations. Of course, these past years would not have been as gratifying without the enduring support and interest from my friends and family. I want to thank all my friends for sharing my ups and downs and for reminding me that my life is much more than the ‘D-word’. A sincere thanks to my parents, Els and Pascal, Nies, William and Michael for their continuous encouragements, even during the past months when I was largely absent from family gatherings. The process of my research has coincided with the development of a fantastic relationship, and I really cannot separate the one from the other. Looking back on these past three years, I realize how actively Vincent (who also designed the title page, by the way) has taken part in my studies and how difficult it would have been without him. While it is true that the more you learn, the less you know, I know that I can be certain about us. ii Table of contents GENERAL INTRODUCTION 0. General introduction: definition, objective and scope ...............................................1 0.1 Xenotransplantation definition .........................................................................1 0.2 Why xenotransplantation? ................................................................................2 0.3 Xenotransplantation ethics ..............................................................................3 0.4 Research objectives and outline .......................................................................5 References ......................................................................................................9 PART ONE: ESTABLISHING THE NEED FOR XENOTRANSPLANTATION 1 Transplantation medicine: evaluating its success ..................................................... 11 1.1 The shortage of human organs: a 'formulaic' presentation ................................... 12 1.2 Policies to augment the human donor pool: an overview ..................................... 13 1.2.1 Instrumental revisions of the ‘dead donor rule’ ........................................... 13 1.2.2 Augmenting the consent rate for cadaveric donation .................................... 16 1.2.3 Optimising living donor utility .................................................................. 20 1.2.4 Optimising cadaveric donor utility ............................................................. 22 1.3 Transplantation: saving lives, the quality of life and health care expenses ............ 23 References .................................................................................................... 28 2 The ethics of organ allocation: frustrations in the face of finitude ............................. 35 2.1 A right to transplantation? ............................................................................. 36 2.2 ‘Right’ and ‘wrong’ in distributing the right to transplantation ............................ 39 2.3 Earning points for moral behaviour .................................................................. 40 2.3.1 Proposal outline ..................................................................................... 41 2.3.2 Discussion ............................................................................................. 44 2.4 Conclusion ................................................................................................... 50 References .................................................................................................... 51 3 Organs galore: an overview of emerging alternatives to the donation model ................ 54 3.1 Not enough deaths to save the dying ............................................................... 55 3.2 Maximizing living ‘donation’: commercialized transplantation ............................. 56 3.2.1 Transplant tourism ................................................................................. 56 3.2.2 Arguments against commercialization ........................................................ 57 3.2.3 Arguments in defence of commercialization ............................................... 58 3.2.4 Reality check: an illustration from Iran ...................................................... 61 3.3 Artificial organs and support devices ............................................................... 63 3.3.1 Artificial kidney and dialysis ..................................................................... 63 3.3.2 Liver support systems .............................................................................