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Annual Report 2010 Published by the German Ethics Council Deutscher Ethikrat Annual Report 2010 Published by the German Ethics Council Chair: Prof. Dr. Edzard Schmidt-Jortzig Jaegerstrasse 22/23 · D-10117 Berlin Phone: +49/30/20370-242 · Fax: +49/30/20370-252 Email: [email protected] www.ethikrat.org © 2011 Deutscher Ethikrat, Berlin All rights reserved. Permission to reprint is granted upon request. Report compiled by: Ulrike Florian English translation: Philip Slotkin MA Cantab. MITI, London Layout: Torsten Kulick Cover design: BartosKersten Printmediendesign, Hamburg March 2011 Annual Report 2010 Contents Introduction ........................................................................................................................................................... 5 Topics ....................................................................................................................................................................... 7 Human biobanks for research ................................................................................................................... 7 Allocation of resources in healthcare ...................................................................................................... 10 Issues of chimera and hybrid research .................................................................................................... 11 Dementia and self-determination ............................................................................................................ 14 Reproductive medicine ............................................................................................................................... 16 Public meetings and promotion of social discourse ..................................................................................... 20 Public Plenary Meetings ............................................................................................................................. 20 Annual Meeting ............................................................................................................................................ 22 External meeting .......................................................................................................................................... 28 Bioethics Forum ............................................................................................................................................ 32 Debates with schoolchildren and students ............................................................................................ 40 Collaboration with the German Bundestag .................................................................................................... 41 International initiatives and contacts .............................................................................................................. 43 Forum of National Ethics Councils of the European Union ................................................................ 43 International Dialogue on Bioethics ........................................................................................................ 44 Global Summit of National Bioethics Advisory Bodies ....................................................................... 45 Trilateral meeting of the ethics councils of Germany, France and the United Kingdom ............. 46 Publications ............................................................................................................................................................ 48 Evolution of the social debate ........................................................................................................................... 49 Outlook ................................................................................................................................................................... 52 The members of the German Ethics Council .................................................................................................. 54 Appendix ................................................................................................................................................................. 56 3 Annual Report 2010 Introduction By virtue of the large number of meetings ruary a hearing involving international and other events held, 2010 was a year experts on human–animal mixed-species marked by intense activity on the part of entities; and in December a hearing on the the German Ethics Council; it was also a regulation of preimplantation genetic di- year that saw many changes. In accord- agnosis in Belgium, France and the United ance with Section 2(4) of the Ethikratgesetz Kingdom. As is clear from the numbers (Ethics Council Act, see Appendix), the attending, both aroused very considerable present report documents the work of the interest among the public and representa- Council from January to December 2010. tives of the world of politics alike. With a view to informing both the po- Besides these meetings, the Ethics litical world and the public at large, the Council for the first time held – in ad- publication of Opinions and the holding dition to the Annual Meeting – a fur- of public meetings constitute the Coun- ther whole-day event outside Berlin. The cil’s principal means of communication. meeting on “Dementia and self-deter- In this connection, the publication of the mination” at the Hamburg Chamber of Ethics Council’s second Opinion, “Hu- Crafts in November met with an impres- man biobanks for research”, in June 2010 sive response on the part of the public. takes pride of place. The Annual Meeting This bears out the Ethics Council’s belief in May and the Bioethics Forum meetings that it is both important and appropriate have now also become regular fixtures in not to confine the events it organizes to the Ethics Council’s programme of public Berlin, thus enabling interested members information on topics in the field of bio- of the public in other parts of the Federal ethics. These were complemented by the Republic to attend the German Ethics holding of two public hearings: in Feb- Council’s public meetings. Plenary meeting of the German Ethics Council 5 German Ethics Council Until September 2009 the Advisory replace them by the Federal Government Council on Ethics had constituted the and were appointed as members of the link between the Bundestag (German Fed- Council by the President of the German eral Parliament), but because that body Bundestag, Professor Norbert Lammert, was not reappointed in the 17th Elec- on 30 June 2010. toral Term, the Council adopted a new approach to enhancing communication with the Members of the Bundestag, in the form of a Parliamentary Evening. The first meeting of this kind was held at the German Bundestag on 24 March 2010 and comprised an exchange with the Deputies on the current and future work of the Council and on the ethical issues of the 17th Electoral Term which they regarded as particularly relevant. During the course of this event, the Ethics Council also pre- sented its Opinion on the anonymous relinquishment of infants, published in November 2009, and discussed it with the Deputies. Both sides took an extremely positive view of the evening, and the wish was immediately expressed to hold further such meetings in the future. At the end of 2010, the Federal Govern- ment for the first time made use of the provision in the Ethics Council Act allow- ing it to give an instruction to the Council. In a joint letter from the Federal Minister of Education and Research, Professor An- nette Schavan, and the Federal Minister of Health, Dr. Philipp Rösler, the Ethics Council was charged on behalf of the Fed- eral Government with the preparation of a report on the situation of intersex people in Germany. Changes in the membership of the Ger- man Ethics Council occurred for the first time since the Council’s formation. On 1 March 2010, Professor Bettina Schöne- Seifert and Dr. Hermann Barth stood down at their own request. In accordance with the provisions of the Ethics Council Act, Professor Heike Walles and Profes- sor Wolfgang Huber were nominated to 6 Annual Report 2010 Topics With a view to the publication of an Opin- blood or DNA, linked to personal data The Opinions of the German Ethics ion, the German Ethics Council consid- and, in particular, to health-related infor- Council can be accessed online at ered the following topics in 2010: mation on their donors. They have a dual www.ethikrat.org character, as collections both of samples /publications /opinions • Human biobanks for research and of data. Most current biobanks are • Allocation of resources in healthcare research biobanks – that is, institutions • Issues of chimera and hybrid research that collect samples and data of human • Dementia and self-determination origin and either use them for their own • Reproductive medicine research or make them available to third parties for research purposes. They are These and other topics were addressed frequently designed to be used for a vari- by the Ethics Council by means of spe- ety of research purposes, some of which cific working groups, as well as in public only arise at a later date. plenary meetings and other public events By virtue of the long-term linkage of (see p. 20 ff.). medical data of many different kinds, biobanks play a vital part in the investi- gation of the causes and mechanisms of Human biobanks for research numerous diseases and their treatment, and constitute an indispensable aid to On 15 June 2010 the German Ethics biomedical research. Council issued its second Opinion,
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