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Ethical, Legal and Psychosocial Aspects of Transplantation Global Challenges E. K. Massey, F. Ambagtsheer, W. Weimar (Eds.) Ethical, Legal and Psychosocial Aspects of Transplantation Global Challenges PABST E. K. Massey, F. Ambagtsheer, W. Weimar (Eds.) Ethical, Legal and Psychosocial Aspects of Transplantation Global Challenges PABST SCIENCE PUBLISHERS Lengerich Bibliographic information published by Die Deutsche Nationalbibliothek Die Deutsche Nationalbibliothek lists this publication in the Deutsche Nationalbibliografie; detailed bibliographic data is available in the Internet at <http://dnb.ddb.de>. This work is subject to copyright. All rights are reserved, whether the whole or part of the mate- rial is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in other ways, and storage in data banks. The use of registered names, trademarks, etc. in this publication does not imply, even in the absence of a spe- cific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The authors and the publisher of this volume have taken care that the information and recommen- dations contained herein are accurate and compatible with the standards generally accepted at the time of publication. Nevertheless, it is difficult to ensure that all the information given is entirely accurate for all circumstances. The publisher disclaims any liability, loss, or damage incurred as a consequence, directly or indirectly, of the use and application of any of the contents of this volume. © 2017 Pabst Science Publishers · D-49525 Lengerich Internet: www.pabst-publishers.de, www.pabst-science-publishers.com E-mail: pabst@pabst-publishers.de Print: ISBN 978-3-95853-292-2 eBook: ISBN 978-3-95853-293-9 (www.ciando.com) Formatting: µ Printed in Germany by KM-Druck, D-64823 Gross-Umstadt Contents Preface Introduction Emma K. Massey, Frederike Ambagtsheer, Franco Citterio, Willem Weimar ............... 11 The role of ethics in the early history of transplantation Michael A. Bos ............................................................. 15 1. Ethical, Legal and Cultural Aspects Summary of Workshop 2: ‘Common problems and national approaches to death and deceased donation’ Thomas Gutmann & Medard Hilhorst ........................................... 25 Common problems and national approaches to death and deceased donation: the Italian approach Marco Vergano & Francesca Baroncelli .......................................... 27 Organ transplantation and assisted dying: where, when, how and why? Deborah Ummel & Mélanie Vachon ............................................ 32 Pre-mortem interventions facilitating organ retrieval: the new Swiss legal framework Mélanie Levy .............................................................. 37 Age and generational relations in organ donation: an emerging field of empirical research and ethical controversy Mark Schweda & Sabine Wöhlke ............................................... 44 Renal transplantation in the Middle East: challenges and opportunities Ala A. Ali ................................................................. 52 Panorama of kidney transplantation in Algeria Khadidja Habchi, Ali Benziane, Mohamed Laib, Aldjia Lamri & Messaoud Saidani ......... 57 2. Living Donation Informing the living donor: practical approaches to moral dilemmas Lisa Burnapp .............................................................. 61 5 Contents The impact of volunteers on unspecified living kidney donation in the UK Christopher Burns-Cox, Paul van den Bosch, Paul Gibbs, Jan Shorrock & Bob Wiggins ...... 66 Live donor autonomy and professional protectionism; inconsistency in medical aspects of live donor evaluation Ian D. Dittmer ............................................................. 69 Is it ethical to offer priority points to compatible pairs participating in kidney exchange programs? Marie-Chantal Fortin ........................................................ 75 The ethics of shifting the US framework of living kidney donation from a disincentive to an incentive based model Giuliano Testa, Steven Hays & Hoylan T. Fernandez ................................. 82 3. Psychological Aspects Summary of Workshop 5: ‘Psychosocial evaluation, support and education of living organ candidates’ Inês Mega & Emma Massey ................................................... 89 The role of an independent living donor advocate: discussion of implementation options for the European setting Rebecca E. Hays. 91 Psychosocial profile of potential kidney recipients and their living non-related donors Susana M. Bayardo, Silvia R. Groppa, Cora Giordani, Cesar Mombelli, Guillermo Rosa Diez & Nora Imperiali ........................................... 98 Quality of Life comparison between haemodialysis patients and expanded criteria kidney transplants Chalini Lankage, Hannah-May Elmasry, Hannah Maple, Nizam Mamode & Nicos Kessaris ............................................... 105 Using the Canadian code of ethics for psychologists to determine the acceptability of organ donation following medical assistanceb to die Marie Achille .............................................................. 113 4. Pediatric Donation and Transplantation Summary of Workshop 4: ‘Pediatric donation and transplantation’ Marion Siebelink & Karl-Leo Schwering .......................................... 125 Impact of living transplantation on family dynamics Karl-Leo Schwering, Kristof Thys, Laure Rougier, Isabelle Aujoulat ...................... 127 6 Contents Under what conditions should minors be considered as potential hematopoietic stem cell donors: a review of guidance documents Miha Orazem & Kristof Thys ................................................... 129 Recent changes in child-organ donation in the UK & what next Joe Brierley ................................................................ 138 5. Organ Trade Summary of Workshop 6: ‘Understanding the human organ trade?‘ Michael A. Bos ............................................................. 145 A critical analysis of organ ‘trafficking’ and the prevailing law enforcement response Seán Columb .............................................................. 149 Illegal transplants and medical responsibility under the light of law and ethics Athina Koufou ............................................................. 155 Current status of organ harvesting from prisoners in China Huige Li .................................................................. 161 Neo-cannibalism and ISIS: organs and tissue trafficking during times of political conflict and war Nancy Scheper-Hughes ...................................................... 166 6. Deceased Donation Summary of Workshop 1: ‘Clinical research in deceased donation: which medical, ethical, legal and societal aspects have to be taken into account?’ Rutger Ploeg & Bernadette Haase ............................................... 177 Directed deceased donation: beyond the impartial allocation dogma Medard Hilhorst ............................................................ 182 Keeping consent in context: what is consent to deceased donation and from whom do we need it? David Shaw ............................................................... 190 Influence of annual educational meetings with icu specialists on rates of deceased donation Eva Šteina & Janis Jushinskis ................................................... 197 7. Public Issues & Communication Summary of Workshop 3: ‘Public issues in organ donation and transplantation’ David Rodríguez-Arias ....................................................... 203 7 Contents An exploration of experiences in campaigns on organ donation in The Netherlands Jeantine M. M. P. J. Reiger-van de Wijdeven ....................................... 205 Partnerships between media and ethics: students peer-to-peer campaigns for organ donation Mihaela Frunză & Ariana Guga ................................................. 213 Undergraduate healthcare students’ knowledge toward organ donation: a survey in an Italian university Lisa Giovannini, Francesco Fontana, Marika Massari & Gianni Cappelli .................. 222 Shifts in public perceptions of deceased organ donation in Denmark: lessons learned about public acceptability Klaus L. Hoeyer ............................................................ 231 Analysis of studies on communication in organ donation and transplantation Marie Lingemann, Danica Avsec, Bernarda Logar Zakrajšek & Thomas Breidenbach ...................................................... 237 FOEDUS Work Package 7 – international approach in communication Thomas Breidenbach, Marie Lingemann, Bernarda Logar Zakrajšek & Danica Avsec ............................................................ 245 Corresponding Authors. 251 Index of Authors ......................................................... 254 8 Preface Introduction In organ transplantation, there is growing emphasis on the ethical, legal and psychosocial aspects. Every three years ELPAT organizes an international conference on the ethical, legal and psycho- social aspects of organ transplantation. ELPAT is a subdivision of the European Society for Organ Transplantation (ESOT). In April 2016 the 4th ELPAT congress was held in an ancient convent dating from 1600: the Angelicum Congress Center in Rome, Italy. This central locus for theological and philosophical debate and learning was an ideal setting for the ELPAT conference. Three hundred and seventy eight delegates from 44 countries
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