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11Th Global Summit of National Ethics / Bioethics Committees Deutscher Ethikrat Berlin 2016 16 – 18 March 11th Global Summit of National Ethics / Bioethics Committees Conference Report Global Health, Global Ethics, Global Justice United Nations Educational, Scientific and Cultural Organization German Ethics Council Global Health, Global Ethics, Global Justice 11th Global Summit of National Ethics/Bioethics Committees 16–18 March 2016, Berlin/Germany The project upon which this publication is based was funded by the German Federal Ministry of Education and Research (funding code 01GP1550). Live videos of all sessions as well as additional documents of the summit in Berlin are available online: https://www.globalsummit-berlin2016.de/documents-and-links Published by the German Ethics Council Jägerstraße 22/23 • D-10117 Berlin Phone: +49/30/20370-242 • Fax: +49/30/20370-252 Email: [email protected] www.ethikrat.org © 2018 Deutscher Ethikrat All rights reserved. Permission to reprint is granted upon request. Layout: Torsten Kulick Cover illustration: BartosKersten Printmediendesign, Hamburg ISBN: 978-3-941957-77-0 (PDF) Contents >> PREFACE ............................................................................................................... 7 >> INTRODUCTION .................................................................................................. 9 >> ACKNOWLEDGEMENT ........................................................................................ 11 >> OPENING SpeecHes ........................................................................................... 13 Joachim Gauck ............................................................................................................... 15 Christiane Woopen ....................................................................................................... 19 Marie-Paule Kieny ......................................................................................................... 25 Thomas Rachel ............................................................................................................... 29 >> REPORTS ON THE GLOBAL SUMMIT .................................................................. 35 Report on the 10th Global Summit 2014 in Mexico ................................................ 37 Report by the Permanent Secretariat of the Global Summit at WHo ............. 41 >> SessiON I: Emerging AND CONVerging TecHNOLOgies ......................... 47 Session Summary ............................................................................................................... 49 Rules for the Digital Human Park .................................................................................. 51 Country Perspective from Iran ....................................................................................... 57 Country Perspective from New Zealand ..................................................................... 61 Discussion Paper: Rules for the Digital Human Park ................................................ 65 >> SessiON II: EPIDemics AND OUTBREAKS ........................................................ 103 Session Summary .......................................................................................................... 105 The WHo Guidance for Managing Epidemic outbreaks .................................... 107 Why Communication? The Lessons Learnt from the MERS Epidemic in South Korea .................................................................................................................... 110 Ethical Aspects Presented by the Advent of the MERS-Co Virus outbreak .... 114 Discussion Paper: WHo Ethical Guidance for Managing Epidemic outbreaks .. 118 >> SessiON III: BIOETHICAL POLicies AND BIOETHICAL LAW ........................... 153 Session Summary .......................................................................................................... 155 Biolaw and Biopolicies ................................................................................................. 157 Practical Applications of NEC Guidelines ............................................................... 161 Bioethical Policies and Biolaw and Its Implementation ....................................... 165 Discussion Paper: Biolaw and Biopolicies ............................................................... 170 5 11TH GLobal SuMMIT oF NATIoNAL ETHICS/BIoETHICS Committees >> SessiON IV: RAISING SOCIAL AWAreness ON BIOETHICAL IssUes ............ 189 Session Summary .......................................................................................................... 191 Social Awareness of Bioethical Issues ..................................................................... 193 The Perspective of the Presidential Commission for the Study of Bioethical Issues ............................................................................................................................... 197 The Singapore Experience ........................................................................................... 199 The Perspective of the Nuffield Council on Bioethics .......................................... 203 >> PREFACE Bioethics Education in Turkey .................................................................................... 206 Discussion Paper: Raising Social Awareness of Bioethical Issues Including Education, Media, and Communications ................................................................. 208 >> REPORT OF INTERNATIONAL OrgANIZATIONS ............................................. 223 Session Summary .......................................................................................................... 225 Report of the World Health organization ............................................................... 227 Report of uNESCo ....................................................................................................... 230 Report of the European Commission ....................................................................... 234 Report of the Council of Europe ................................................................................ 237 Report of the Council for International organizations of Medical Sciences .. 241 >> REPORT ON THE RegiONAL MEETings ............................................................ 245 >> MARKETPLACE ..................................................................................................... 249 Marketplace Sessions .................................................................................................. 251 Marketplace Session I .................................................................................................. 252 Marketplace Session II ................................................................................................. 257 Marketplace Session III ............................................................................................... 265 Marketplace Session IV ............................................................................................... 274 >> ANNEX .................................................................................................................. 281 Travel Grants .................................................................................................................. 283 Steering Committee ..................................................................................................... 285 Speakers, Authors and Discussants .......................................................................... 288 Participants ..................................................................................................................... 295 6 11TH GLobal SuMMIT oF NATIoNAL ETHICS/BIoETHICS Committees >> PREFACE || It has been two years since the German Ethics Council was mandated by the Global Summit in Mexico to host the 11th Global Summit of National Ethics/Bioethics Com- mittees in Berlin. Two years, that have seen a rapid advancement in scientific and technological progress. It shifted the boundaries of what is scientifically explorable by new tools like CRISPR-Cas9 and what is medically feasible e.g. through innova- tive drugs in cancer therapy or through digital applications. Such progress raises new questions about what is ethically justifiable and desirable. It also enforces the need for public debate and for providing guidance on ethical issues of national and of global concern through national ethics/bioethics committees. The German Ethics Council was deeply impressed by the significant number of 120 delegates of national ethics/bioethics committees from 79 countries, representa- tives of international organizations and German ministries adding up to nearly 200 participants who travelled to Berlin to participate in this year’s Global Summit. This is not only a sign of growing importance of this international meeting, it also indi- cates the increasing global dimension and need for exchange on bioethical issues, and the growing awareness of nations that dialogue is necessary and meaningful. I am very grateful for the attendance of the Federal President of Germany, the reception by the President of the German Parliament and the generous financial grant by the Federal Ministry of Education and Research. With ever increasing tech- nological advancement in medicine and in the life sciences, a strong support for ethics/bioethics committees and their international cooperation by national political institutions is of major importance. The preparations for the Global Summit 2016 have been a joint effort by the
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