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Weimar EULOD Inhalt.Indd F. Ambagtsheer, W. Weimar (Eds.) The EULOD Project Living Organ Donation in Europe Results and Recommendations www.eulod.eu PABST SCIENCE PUBLISHERS Lengerich · Berlin · Bremen · Miami Riga · Viernheim · Wien · Zagreb 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. The project on Living Organ Donation in Europe was a Coordination Action, funded by the Seventh Framework Programme of the European Commission from 2010 until 2012. The researchers were helped by members of ELPAT during two EU-funded working group meetings in Sofia, Bulgaria (2010) and Berlin, Germany (2011). ELPAT is the European platform on ethical, legal and psychosocial aspects of organ transplantation. It is an official committee of the European Society for Organ Transplantation (ESOT). © 2013 Pabst Science Publishers · D-49525 Lengerich Internet: www.pabst-publishers.de, www.pabst-science-publishers.com E-mail: [email protected] ISBN: 978-3-89967-858-1 Formatting: µ Printed by KM-Druck, D-64823 Gross-Umstadt Contents Page Consortium. 6 Frederike Ambagtsheer and Willem Weimar Introduction . 7 A. Lennerling, C. Lovén, F. Dobbels, N. Duerinckx, A. Pascalev, N. Codreanu, M. Frunza, W. Zuidema, F. Ambagtsheer, F. Dor, W. Weimar Living Organ Donation in Europe – Clinical Praxis . 9 A. Pascalev, Y. Krastev, A. Ilieva Expanding Living Organ Donation in Europe: Attitudes, Barriers and Opportunities. Results from a Multi-country Focus Group Study . 27 A. Pascalev, Y. Krastev, A. Ilieva Ethical Analysis of the Arguments for and against Living Organ Donation. 53 L. Lopp Analysing the Core Normative Arguments that Dominate the Policy Arena about Necessity and Legitimacy of Legal Restrictions in Living Donor Transplantation. 77 L. Lopp Best Practice Proposal: Legal Safeguards For Living Organ Donation in Europe in Consideration of the Current National Regulations. 107 J. Sándor, V. Beširević, E. Demény, G. Tudor Florea, N. Codreanu Organ Trafficking, Organ Trade. Recommendations for a more Nuanced Legal Policy . 147 Biographies . .175 Addresses of Authors. 179 5 Consortium The following persons made the results of this project possible: European Society for Organ Transplantation Central European University, (The Netherlands) Center for Ethics and Law in Biomedicine Prof. Dr. Rutger Ploeg (Hungary) Dr. Carla Baan Prof. Judit Sándor Annalisa Ponchia Prof. Violeta Beširevic Chiara Parisotto Dr. Enikö Demény Kate Brooman Teddy Florea University of Gothenburg, Renal Foundation (Moldova) Sahlgrenska University Hospital (Sweden) Dr. Natalia Codreanu Dr. Annette Lennerling Dr. Gaibu Sergiu Charlotte Lovén Cristina Fleshtor The University of Münster, Tartu University Hospital (Estonia) Centre for Advanced Study in Bioethics Prof. Hele Everaus and BioLaw (Germany) Riina Liivand Prof. Thomas Gutmann Dr. Bijan Fateh Moghadam The Academic Society for the Research Leonie Lopp of Religions and Ideologies (Romania) Ruth Langer Dr. Mihaela Frunza Katholieke Universiteit Leuven, Polish Coordinating Transplant Center Center for Health Services and Nursing (Poltransplant) Research (Belgium) Dr. Jaroslaw Czerwinski Prof. Fabienne Dobbels Dr. Dorota Lewandowska Nathalie Duerinckx Erasmus MC – University Medical Center Bulgarian Center for Bioethics (Bulgaria) Rotterdam (The Netherlands) Dr. Assya Pascalev Prof. Dr. Willem Weimar Dr. Adelina Ilieva Frederike Ambagtsheer Dr. Yordanka Krastev Marian van Noord 6 Introduction EULOD: Living Organ Donation in Europe Living organ donation is increasingly introduced by transplant centres as a valuable alternative to bridge the gap between demand and supply of organs. Living organ donation poses opportunities, but also involves ethical, legal and psychosocial implications. Moreover, there is large heterogene- ity among European countries in terms of living donation rates, ethical concerns, legislation and protection systems for living organ donors. The project on Living Organ Donation in Europe (EULOD), a Coordination Action funded by the Seventh Framework Programme of the European Commission, was a response to this European heterogeneity and to the urgent policy needs expressed by various EU institutions. The project started in March 2010 and ended in September 2012. It aimed to establish an inventory of living donation practices in Europe, explore and promote living donation as a way to increase organ availability, and to present recommendations to improve the quality and safety of living organ donations in Europe. Eleven institutions from ten different European countries were involved. The partners collaborated closely with the European platform on Ethical, Legal and Psy- chosocial Aspects of Organ Transplantation (ELPAT) and the European Society for Organ Transplan- tation (ESOT). This book presents the study results of this project. The results range from describing living organ donation practices across European countries, highlighting opinions and conceptions of indi- viduals towards living donation, exploring ethical arguments for and against living donation, analyz- ing European transplant laws regarding living organ donation, to scrutinizing the current prohibition of organ trafficking and transplant commercialism in national and international law. Discussions about expanding living organ donation in Europe do not occur without debate. The aim of this project hence was not to achieve consensus on ethical principles that accompany the expansion of live donation. The arguments presented in the six papers express the individual opinions of the authors and not of that of the consortium. We are grateful for the commitment of all partners in this project, and would like to thank each of them for generating an output that is unique to this field of transplant medicine. We trust that you will read our work with great interest. It is our hope that our results and rec- ommendations will contribute to your every day practice, and that they will help you to consider ways in which living organ donation can be expanded safely and ethically in countries worldwide. Rotterdam, February 2013 Frederike Ambagtsheer and Willem Weimar Erasmus MC University Medical Center Rotterdam Coordinators of the EULOD project 7 8 Living Organ Donation in Europe – Clinical Praxis* Annette Lennerling1, Charlotte Lovén1, Frank JMF Dor2, Frederike Ambagtsheer3, Nathalie Duerinckx4, Mihaela Frunza5, Assya Pascalev6, Natalia Codreanu7, Willij Zuidema3, Willem Weimar3 and Fabienne Dobbels4 1 Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden (UGOT) 2 Department of Surgery, Division of Transplant Surgery, Erasmus MC, University Medical Center, Rotterdam, The Netherlands (EMC) · 3 Department of Internal Medicine, Erasmus MC, University Medical Center, Rotterdam, The Netherlands (EMC) · 4 Centre for Health Services and Nursing Research; KU Leuven, Leuven, Belgium (KU) · 5 Babes-Bolyai University, Department of Philosophy, Cluj, Romania (SACRI) ·6 Bulgarian Center for Bioethics, Sofia, Bulgaria (BCB) 7 Renal Foundation, Chisinau, Moldova (FR) Contents Page Introduction . 10 Methods . 11 Design and sample . 11 Development of the survey . 11 Procedure . 11 Results . 12 Living kidney donation . 12 Living liver donation . 12 Barriers to living kidney and liver donation programmes . 15 Discussion . 15 Donor selection and safety . 15 Reimbursement . 16 Follow-up . 16 Barriers to living donation . 17 Methodological limitations . 17 Recommendations . 18 Acknowledgement . 18 Bibliography . 19 Table 1 . 21 Table 2 . 22 Table 3 . 23 Table 4 a . 24 Table 4 b . 25 Figure 1, Figure 2 . 26 * This book chapter has been revised from its original published form, Living Organ Donation Practices in Europe – results from an Online Survey by Lennerling A, Lovén C, Dor FJ, Ambagtsheer F, Duerinckx N, Frunza M, Pascalev A, Zuidema W, Weimar W and Dobbels F, in Transplant International 2013; 26 (2): 145-53. doi: 10.1111/tri.12012. Epub 2012 Dec 1. Permission has been given by Verity Butler, Permissions Co-ordinator at Wiley. 9 Lennerling, Lovén, Dor, Ambagtsheer, Duerinckx, Frunza, Pascalev, Codreanu, Zuidema, Weimar, Dobbels Introduction Since the early fifties, organ transplantation has been one of the most rapidly evolving areas in medical science, resulting in excellent survival and quality of life. This success is mainly due to the development of immunosuppressive
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