Deutscher Ethikrat Annual Report 2011 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 © 2012 Deutscher Ethikrat, Berlin All rights reserved. Permission to reprint is granted upon request. Report compiled by: Ulrike Florian English translation: Margaret Marks Ph.D., MITI, Fürth Layout: Torsten Kulick Cover design: BartosKersten Printmediendesign, Hamburg April 2012 Annual Report 2011 Contents Introduction ........................................................................................................................................................... 5 Topics ....................................................................................................................................................................... 7 Medical benefits and costs in healthcare ................................................................................................ 7 Preimplantation genetic diagnosis ........................................................................................................... 10 Human–animal mixtures in research ....................................................................................................... 15 Intersexuality ................................................................................................................................................. 19 Dementia and self-determination ............................................................................................................ 22 Genetic diagnosis ......................................................................................................................................... 23 Public meetings and promotion of social discourse ..................................................................................... 24 Annual meeting: Feeding the world ......................................................................................................... 24 Public meeting: Synthetic biology ............................................................................................................ 28 Bioethics Forum: The controversial case of baby drops ...................................................................... 33 Bioethics Forum: Research on medicines in children .......................................................................... 36 Dialogue of experts: Need for legislation on research with human biobanks? ............................. 40 Online discourse on intersexuality .......................................................................................................... 42 Panel discussions with students ................................................................................................................ 42 Collaboration with the German Bundestag .................................................................................................... 44 Parliamentary Evening on 23 March 2011 ................................................................................................ 44 Parliamentary Evening on 26 October 2011 ............................................................................................ 45 International initiatives and contacts .............................................................................................................. 47 Meetings of the national ethics councils of the European Union ..................................................... 47 Trilateral meeting of the ethics councils of Germany, France and the United Kingdom ............. 48 Publications ............................................................................................................................................................ 50 Opinions ......................................................................................................................................................... 50 Proceedings ................................................................................................................................................... 50 Infobrief .......................................................................................................................................................... 50 Evolution of the social debate ........................................................................................................................... 51 Outlook ................................................................................................................................................................... 55 The members of the German Ethics Council .................................................................................................. 56 Appendix ................................................................................................................................................................. 58 3 Annual Report 2011 Introduction The year 2011 was an exceptionally crea- In order to encourage direct exchange tive one for the German Ethics Coun- of opinions between the Ethics Council cil. This is shown not only by the large and the members of the German Bunde- number of meetings of the plenum and stag, two Parliamentary Evenings were the working groups, but also by the num- held, in the course of each of which the ber of Opinions presented and of public Council’s latest Opinions were presented events and further initiatives of public and discussed. The Bundestag members discourse. find these events extremely interesting, as With regard to providing information was shown in particular by the fact that to politicians and the public, the Opinions more than forty members attended the and public events are the cornerstones of Parliamentary Evening on 23 March 2011 the Council’s work. In this connection, on the Bundestag premises. The President pride of place goes to the three Opin- of the German Bundestag, Professor Dr. ions which the Ethics Council presented Norbert Lammert, welcomed the Ethics in 2011: “Medical benefits and costs in Council members and expressly thanked healthcare: The normative role of their the Ethics Council for the Opinion on evaluation” (January 2011), “Preimplanta- preimplantation genetic diagnosis. He tion genetic diagnosis” (March 2011) and praised this as an extremely important “Human–animal mixtures in research” document in which the Bundestag mem- (September 2011). In addition to the in- bers could find all the relevant informa- tensive consultations on the Opinions, the tion including an objective weighting and Ethics Council held six public events and evaluation of the arguments. He said that introduced a new style of public debate in this was the kind of consultation which the form of an online discourse. he hoped to see in the work of the Ethics Parliamentary Evening of the German Ethics Council at the Paul-Löbe-Haus of the German Bundestag 5 German Ethics Council Council and which all members could use in the field of life sciences and their ap- in order to form their own opinion on plication to humans. Its duties include ethically problematical questions. informing the public and promoting so- The second Parliamentary Evening cial discourse involving the various social on 26 October 2011, in which Eduard groups, preparing Opinions and recom- Oswald, the Vice-President of the Ger- mendations for political and legislative man Bundestag, welcomed the Council action and working together with national members, was also well received by the ethics councils and similar institutions members, who used it to inform them- of other countries and of international selves on the Opinion on human–animal organizations. The present report docu- mixtures and to discuss the topic. ments, in compliance with section 2(4) of The year 2011 was dominated by the the Ethikratgesetz (Ethics Council Act, see work on the Opinion on intersexuality, appendix) in what way and to what extent which the Federal Government instructed the Council fulfilled this requirement in the Ethics Council to prepare in Decem- the time from January to December 2011. ber 2010. The Ethics Council found that the state of scientific data on this topic was insufficient, and therefore it commis- sioned a survey of persons affected and experts, arranged a public hearing and initiated an online discourse, in which the internet was first used as a forum for public debate. At the end of October 2011, the Federal Government commissioned the Ethics Council to prepare an Opinion, for the second time since the Council was consti- tuted in April 2008. In a joint letter from Professor Dr. Annette Schavan, the Fed- eral Minister of Education and Research, and Daniel Bahr, the Federal Minister of Health, the Ethics Council was requested in the name of the Federal Government to prepare an Opinion on the topic of “The future of genetic diagnosis from genetic research to clinical practice – social chal- lenges of new methods of genetic diagno- sis, taking particular account of predictive and prenatal methods”. The German Ethics Council is required by law to follow the ethical, social, scien- tific, medical and legal questions and the expected consequences for the individual and society which arise in connection with research and developments, in particular 6 Annual Report 2011 Topics With a view to the publication of an Opin- of deterioration of quality arising from ion, the German Ethics Council consid- relative scarcity of resources in areas of ered