Final list / Liste finale

Symposium

Biobanks and biomedical collections An ethical framework for future research

19-20 June 2012

Palais de l’Europe, Strasbourg, France

Event organised by the Committee on Bioethics (DH-BIO) of the Council of Europe

List of participants

Symposium

Biobanques et collections biomédicales Un cadre éthique pour les recherches futures

19-20 juin 2012

Palais de l’Europe, Strasbourg, France

Evènement organisé par le Comité de Bioéthique (DH-BIO) du Conseil de l’Eu rope

Liste des participants

SESSION CHAIRS / PRESIDENTS DE SESSION

Dr Javier ARIAS-DIAZ Member of the Coordination Group for the organisation of the Symposium/Membre du Groupe de Coordination pour l’organisation du symposium Terapia Celular y Medicina Regenerativa Instituto de Salud Carlos III Avda. Monforte de Lemos 5 28029 Madrid Spain Prof. Dr. Elmar DOPPELFELD Member of the Coordination Group for the organisation of the Symposium/Membre du Groupe de Coordination pour l’organisation du symposium Union des Comités d'Ethique Allemands Bachemer Strasse 29-33 50931 KÖLN Germany Dr Anne FORUS Chair of the Coordination Group for the organisation of the Symposium/Présidente du Groupe de Co-ordination pour l’organisation du Symposium Biotechnology and health legislation department The Norwegian Directorate for Health Division of specialised health care services P.O. Box 7000 St. Olavs plass 0130 OSLO Norway Prof. Eugenijus GEFENAS Chair of the Committee on Bioethics (DH-BIO)/Président du Comité de Bioéthique (DH-BIO) Lithuanian Bioethics Committee Vilnius str. 33 2001 Vilnius Lithuania Dr Jane KAYE Rapporteur of the European Commission Expert Group on biobanks/Rapporteur du Groupe d’experts de la Commission européenne sur les biobanques Department of Public Health University of Oxford Old Road Campus Oxford OX3 7LF United Kingdom Mr Jan KAŹMIERCZAK General Rapporteur on Science and Technology Impact Assessment (Parliamentary Assembly of the Council of Europe)/Rapporteur général sur l’évaluation de l’impact de la science et de la technologie (Assemblée Parlementaire du Conseil de l’Europe) Sejm, ul. Wiejska 4/6/8 00-902 Warsaw Poland

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Prof. Graeme LAURIE Director of Research, School of Law/Directeur de la recherche School of Law University of Edinburgh Old College South Bridge Edinburgh EH8 9YL United Kingdom Dr Siobhán O'SULLIVAN Member of the Coordination Group for the organisation of the Symposium/Membre du Groupe de Coordination pour l’organisation du symposium Chief Bioethics Officer Dept. of Health Hawkins House Dublin 2 Ireland Dr Lino PAULA Directorate-General for Research and Innovation/Direction Générale de la Recherche et de l’Innovation European Commission European Research Area Ethics and Gender Unit Office SDME 3/14 1049 Brussels Belgium Dr Emmanuelle RIAL-SEBBAG Member of the European Commission Expert Group on biobanks/Membre du Groupe d’experts de la Commission européenne sur les biobanques Chargée de recherches INSERM UMR U 1027, Inserm, Université de Toulouse - Université Paul Sabatier -Toulouse III Equipe 4: "Génomique, biothérapies et santé publique : approche interdisciplinaire" Plateforme Sociétale "Génétique et Société", GIS Genotoul, Génopole Toulouse Midi-Pyrénées 37, allées Jules Guesdes 31073 Toulouse Cedex France

OPENING SESSION / SESSION D’OUVERTURE

Mr Philippe BOILLAT Director General, Directorate General Human Rights and Rule of Law Council of Europe Directeur Général, Direction Générale Droits de l’Homme et Etat de droit Conseil de l’Europe Dr Octavi QUINTANA TRIAS Director of the European Research Area European Commission Directeur de l’Espace européen de la recherche Commission européenne

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SPEAKERS / INTERVENANTS

Prof. Christian CHABANNON Director of the Cancer Biobank/Directeur de la Biobanque du cancer Coordination du Canceropôle PACA Institut Paoli-Calmettes Faculté de Médecine - Site Timone 27 Boulevard Jean Moulin 13385 MARSEILLE Cedex 05 France Prof. Martina CORNEL Professor of Community Genetics and Public Health Genomics/Professeur de génétique et gé-nomique communautaire de santé publique VU University Medical Center Van der Boechorststraat 7 1081 BT Amsterdam The Netherlands Dr Anne FORUS Chair of the Coordination Group for the organisation of the Symposium/Présidente du Groupe de Co-ordination pour l’organisation du Symposium Biotechnology and health legislation department The Norwegian Directorate for Health Division of specialised health care services P.O. Box 7000 St. Olavs plass 0130 OSLO Norway Prof. Herbert GOTTWEIS, apologised/excusé Chair of the European Commission Expert Group on biobanks/Président du Groupe d'experts de la Commission européenne sur les biobanques Department of Political Science University of Vienna Neues Institutsgebäude Universitätsstr. 7/2. Stock 1010 Vienna Austria Prof. Kristian HVEEM Director of the HUNT Biobank - leader of Biobank Norway/Directeur de la Biobanque “HUNT” - res-ponsable de Biobank Norway Faculty of Medicine Norwegian University of Science and Technology 7491 Trondheim Norway Prof. Bartha Maria KNOPPERS Director of the Centre of Genomics and Policy/Directrice du Centre de Génomique et Politiques Canada Research Chair in Law and Medicine Director, Centre of Genomics and Policy Faculty of Medicine, Dept. of Human Genetics McGill University, 740 Dr. Penfield Avenue,Rm 5214 Montreal, QC. H3A 1A4 Canada

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Dr Roberto LATTANZI Head of Unit, Italian Data Protection Authority, Member of the European Commission Expert Group on biobanks/Chef de Département, Autorité italienne de protection des données, Membre du Groupe d’experts de la Commission européenne sur les biobanques Garante per la protezione dei dati personali Via Merulana 76 00186 Roma Italy Prof. Graeme LAURIE Director of Research, School of Law/Directeur de la recherche School of Law University of Edinburgh Old College South Bridge Edinburgh EH8 9YL United Kingdom Prof. Milan MACEK Head of the Department of Biology and Medical Genetics, Member of the European Commission Ex-pert Group on biobanks/Chef du Service de biologie et génétique médicale, Université Charles de Prague, Membre du Groupe d'experts de la Commission européenne sur les biobanques Head of the National Center for Cystic Fibrosis University Hospital Motol and 2nd School of Medicine Charles University V Uvalu 84, Praha 5 150 06 Prague Czech Republic Prof. Andres METSPALU Head of the Estonian Genome Center/Chef du Centre de génomique d’Estonie University of Tartu 23 Riia St. Tartu 51010 Estonia Dr Pilar NICOLAS Research projects co-ordinator, Inter-University Chair in Law and the Human Ge-nome/Coordinatrice des projets de recherche, Chaire Inter-universitaire de Droit et Génome Hu-main Universidad de Deusto Avenida Universidades, 24 48007-BILBAO Bizkaia Spain Prof. Elisabeth RYNNING Professor of Medical Law/Professeur de droit médical Department of Law Uppsala University Box 512 75120 Uppsala Sweden Prof. Christian SCERRI Associate Professor, Department of Physiology and Biochemistry/Professeur agrégé, Service de physiologie et de biochimie Laboratory of Molecular Genetics, Biomedical Sciences Building University of Malta 2080 Malta

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Prof. Kurt ZATLOUKAL Coordinator of BBMRI/Coordinateur du BBMRI Institute of Pathology Medical University of Graz Auenbruggerplatz 25 8036 Graz Austria

GENERAL ROUNDTABLE / TABLE RONDE GENERALE

MODERATOR / MODERATEUR Mr Dick AHLSTROM Science Editor of the Irish Times/Rédacteur scientifique en chef du Irish Times The Irish Times Irish Times Building Tara Street Dublin 2 Ireland PARTICIPANTS Dr Björn DAHLLÖF Executive Director, Biobanking & Sample Management/Directeur exécutif, Gestion des biobanques & des échantillons Novartis Basel Switzerland Dr Monica ENSINI Registers and Biobanks Senior Manager/Responsable des projets registres et biobanques EURORDIS Plateforme Maladies Rares 96, Rue Didot 75014 Paris France Dr Martin GÖTZ Scientific expert/Expert scientifique Office fédérale de la santé publique Division Biomédecine Seilerstrasse 8 3003 Bern Suisse Prof. Bartha Maria KNOPPERS Director of the Centre of Genomics and Policy/Directrice du Centre de Génomique et Politiques Canada Research Chair in Law and Medicine Director, Centre of Genomics and Policy Faculty of Medicine, Dept. of Human Genetics McGill University, 740 Dr. Penfield Avenue,Rm 5214 Montreal, QC. H3A 1A4 Canada

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Dr Bob PHILIPPS Director General of Integrated BioBank of Luxembourg (IBBL)/Directeur général de Biobanque intégrée de Luxembourg (IBBL) 35, rue Michel Engels 1465 Luxembourg Luxembourg Prof. Alexander TONEVITSKY, apologised/excusé Head of the Laboratory of Molecular Physiology/Chef du Laboratoire de physiologie moléculaire Institute of General Pathology and Pathophysiology Russian Academy of Medical Sciences Solyanka, 14 109240 Moscow Russian Federation Dr Anneli TÖRRÖNEN Ministerial Advisor/Conseillère ministérielle Ministry of Social Affairs and Health P.O. Box 33 00023 Government Finland Prof. Erich WICHMANN Spokesperson of the Epidemiological Planning Committee (EPC) of the German National Cohorte, German Coordinator of the European Biobanking and Biomolecular Resources Research Infrastruc-ture (BBMRI)/Porte-parole du Comité de planification épidémiologique (EPC) de la Cohorte nationale allemande, Coordinateur allemand de l'Infrastructure de la recherche relative aux biobanques et aux ressources biomoléculaires (BBMRI) Director Helmholtz Center Munich German Research Center for Environmental Health Ingolstädter Landstr. 1 85764 Neuherberg Germany Dr Nikolajs ZEPS Research group leader, member of the Australian health ethics committee/Responsable de recherche, membre du comité australien d'éthique de la santé St John of God Subiaco Hospital Level 5, Bendat Family Comprehensive Cancer Centre 12 Salvado Road SUBIACO WA 6008 Australia

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PARTICIPANTS

ARMENIA / ARMENIE Prof. Tamara SARKISIAN Director of CMG, Head specialist of Ministry of Health of Armenia, Head of department of medical genetics of State medical university Center of medical genetics and primary health care (CMG) 34/3 Abovyan street , Yerevan, 375001 tamsar@sci.am AUSTRIA / AUTRICHE Dr Alexander HOENEL Head Institute for Inspections, Medical Devices and Hemovigilance Federal Office for Safety in Health Care, Institute for Inspections, Medical Devices and Hemovigilance Traisengasse 5, 1200 Vienna alexander.hoenel@basg.gv.at BELGIUM / BELGIQUE Dr Fadi ABDULSATER Coordinateur de la Biobanque IPG institut de pathologie et génétique 25, avenue Georges lemaître 6041-Gosselies fadi.abdulsater@ipg.be Dr Julian COCKBAIN Consultant European Patent Attorney Independent/Patent attorney Hoogpoort 28A101 9000 Gent julian.cockbane@btopenworld.com Dr Ligia CRACIUN Biobank manager, Anatomical Pathology Department Jules Bordet Institute 125 Boulevard de Waterloo Brussels 1000 ligia.craciun@bordet.be Mrs Céline DEGAILLIER Assistant de projet pour la Tumorothèque Virtuelle Belge Registre du Cancer Rue Royale 215 / 7 1210 Bruxelles celine.degaillier@kankerregister.org

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Prof. Nadine ECTORS Coordinator Activity Center Biobanking University University / University Hospitals Leuven - Belgium ; participating in Flemish initiative and National Bel-gian initiative for biobanking ; Coordinator AC Biobanking University University Hospitals Leuven Herestraat 49 3000 Leuven Nadine.Ectors@uzleuven.be Ms Ilse GUTIERREZ-ROELENS Gestionnaire de la biobanque de l'UCL, Service d'Anatomie Pathologique Université catholique de Louvain Tour Franklin 1, Avenue Hippocrate, 10 1200 Bruxelles ilse.gutierrez@uclouvain.be Dr Isabelle HUYS Docent patent law, faculty of pharmaceutical sciences, KULeuven Katholieke Universiteit Leuven Herestraat 49, box 521 3000 Leuven isabelle.huys@pharm.kuleuven.be Ms Marion MAETENS Translational Research Manager Jules Bordet Institute Bd de Waterloo 127 1000 Brussels marion.maetens@bordet.be Prof. Myriam REMMELINK Clinical Head, Department of Pathology HOPITAL ERASME, Pathology Department 808 Route de Lennik 1070 Brussels myriam.remmelink@erasme.ulb.ac.be Prof. Isabelle SALMON Head of Department, Department of Pathology HOPITAL ERASME, Pathology Department 808 Route de Lennik 1070 Brussels isabelle.salmon@erasme.ulb.ac.be Prof. Elke SMITS Liaison Officer Clinical Research Center Antwerp Antwerp Univesity Hospital Wilrijkstraat 10 2650 Edegem elke.smits@uza.be Mr Alex SPINETTE Laborantin Institut Jules Bordet 121, BD Waterloo Bruxelles, 1000

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Prof. Sigrid STERKCX Professor of Ethics, Department of Philosophy & Moral Sciences Ghent University, Bioethics Institute Ghent, Bioethics (expertise on, inter alia, biobanking, patenting of human body material, ethical and legal aspects of therapeutic and research uses of human body ma-terial) Hoogpoort 28 A101 9000 Gent sigrid.sterckx@ugent.be Mr Michiel VERLINDEN Doctorandus, Faculty of Pharmaceutical Sciences KU Leuven - Expertise in legal framework of biobanks Herestraat 49, box 521 3000 Leuven michiel.verlinden@pharm.kuleuven.be Ms Malvika VYAS Policy Analyst Rohde Public Policy Rohde Public Policy, Avenue Michel-Ange 86 Brussels 1000 DENMARK / DANEMARK Mr Morten ANDREASEN Project leader The Danish Council of Ethics / MSc Biology/philosophy and PhD Public Health Rentemestervej 8 2400 Copenhagen NV moa@etiskraad.dk FINLAND / FINLANDE Dr Riitta BURRELL Senior Officer, Legal Affairs National Supervisory Authority for Welfare and Health Valvira, P.O. Box 210 FI-00531 Helsinki riitta.burrell@valvira.fi Dr Pirjo PENNANEN Head of Unit, Medical Counsellor National Supervisory Authority for Welfare and Health, Valvira PB 210 00531 Helsinki pirjo.pennanen@valvira.fi Prof. Heikki RUSKOAHO Chairperson of the National Committee on Medical Research Ethics, TUKIJA National Committee on Medical Research Ethics (TUKIJA, acronym) Professor in University of Oulu Department of Pharmacology and Toxicology P.O. BOX 5000 90014 University of Oulu heikki.ruskoaho@oulu.fi

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Ms Soini SIRPA Senior legal adviser Institute for Health and Welfare (THL) & BBMRI Finland Mannerheimintie 166, POB 30 00271 Helsinki sirpa.soini@thl.fi Dr Juha Pekka TURUNEN, apologised/excusée Secretary Advisory Board on Biotechnology c/o The Finnish Medical Society Duodecim PO Box 713, Kalevankatu 11 A 00101 Helsinki juha.turunen@duodecim.fi FRANCE Mr Mohamad ALI Doctorant en neurosciences Laboratoire d'imagerie et des neurosciences cognitives 17 rue des mineurs 67000 Strasbourg Mrs Nadia AUBIN-MOUGIN Directrice Forum Européen de Bioéthique 9, place Kléber 67000 Strasbourg nadia.aubin@febs.fr Mrs Sylvie BACH Professeur Agrégé de Philosophie Lycée Jean Rostand 5 Rue Edmond Labbe 67084 Strasbourg sylvbach@gmail.com Melle Anne BAHR Directeur-Adjoint Protection des données personnelles R&D Sanofi 1 avenue Pierre Brossolette 91385 Chilly-Mazarin Cedex Mr François BONNAY Doctorant (Université de Strasbourg) UPR9022 CNRS 15, rue René Descartes 67084 Strasbourg f.bonnay@ibmc-cnrs.unistra.fr Ms Georgia BUSCAGLIA Student Syracuse University Strasbourg

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Ms Amanda FUHR Student Syracuse University Strasbourg Ms Jasjote GREWAL Masters Student in Ethics Centre Européen d'Enseignement et de Recherche en Éthique (CEERÉ) de l'Université de Strasbourg 37 Rue de St-Dié 67100 Strasbourg jasjotegrewal@yahoo.com Ms Samantha HALLER Doctorante (Université de STRASBOURG) UPR9022 CNRS 15 rue René Descartes 67084 Strasbourg s.haller@ibmc-cnrs.unistra.fr Prof. Michel HASSELMANN Professeur des Université-Praticien Hospitalier Chef de servicede réanimation NHC -Hôpitaux Universitaires -Président de l'Espace Ethique Régional Hôpitaux Universitaires - Université de Strasbourg. Réanimation - Ethique Rénimation Médicale - NHC - CHRU 1 place de l'hôpital 67091 Strasbourg Cedex m.hasselmann@unistra.fr Mr Romain HOFFMANN Etudiant Strasbourg hoffmann.romain@yahoo.fr Dr Daria JULKOWSKA Project manager GIS Institut des Maladies Rares Plateforme Maladies Rares 96 Rue Didot 75014 Paris djulkowska@gis-maladiesrares.net Ms Laura JUNG Doctorant (équipe Prof. Stéphane Viville) IGBMC Programmme Biologie du développement et cellules souches 1 rue Laurent Fries 67400 Illkirch laura.jung@igbmc.fr Mr Hye Lee KIM Student Syracuse University Strasbourg Ms Séverine KUPFER Responsable Propriété Intellectuelle et Contrefacon Leem - Les Entreprises du Médicament 88 rue de la Faisanderie 75116 Paris skupfer@leem.org / djf@leem.org

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Mrs Véronique LEGENDRE Praticien Hospitalier Hopitaux Universitaires de Strasbourg / Chercheur Associé Laboratoire Ethique et Pratiques Médicales IRIST EA 3424 Pôle de Psychiatrie et Santé Mentale, clinique Psychiatrique 1 place de l'Hôpital 67091 Strasbourg Cedex veronique.legendrechru-strasbourg.fr Mr Eder MANCERA PhD Student Institut de Biologie Moléculaire de Plantes Université de Strasbourg 12 Général Zimmer 67084 Strasbourg eder.mancera@ibmp-cnrs.unistra.fr Mr Damien MARECHAL PhD student Recherche fondamentale 1 rue Laurent Fries 67404 Illkirch Cedex marechal@igbmc.fr Mrs Sandra MEYER PhD 1st year EA4438-Equipe signalisation et cancer de la prostate 1 place de l'hôpital 67000 strasbourg sandra883@msn.com Mr Gregory OWCARZ Professor Syracuse University Strasbourg gregory.owcarz@csun.edu Dr Muhammad RAFIQ Student INSERM/Physiopathology Faculté de médecine 11 rue Humann 67000 Strasbourg rafiqdar@hotmail.com Prof. Jean-Christophe WEBER Professeur à la Faculté de Médecine - Chef de service Hospitalier / Service de Médecine Interne - Hôpitaux Universitaires de Strasbourg Centre Européen d'Enseignement et de Recherche en Ethique / Université de Strasbourg / Ethique clinique Service de Médecine interne Nouvel Hôpital Civil 1, place de l'hôpital - BP 426 67091 Strasbourg Cedex jean-christophe.weber@chru-strasbourg.fr

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GERMANY / ALLEMAGNE Dr Joachim VETTER Head of Office German Ethics Council Jaegerstrasse 22/23 10117 Berlin vetter@ethikrat.org Prof. Matthias WJST PI, CPC/ILBD Helmholtz Zentrum München Ingolstädter Landstr 1 85764 München-Oberschleissheim wjst@helmholtz-muenchen.de GREECE / GRECE Dr Catherine STAVROPOULOS-GKIOKAS Professor, Department of Pharmacology and Toxicology University of Oulu Cord Blood Bank and Bioibank, Biomedical Foundation Academy of Athens cstavrop@bioacademy.gr HUNGARY / HONGRIE Ms Szilvia MAGYAROSI Biobank Coordinator Semmelweis University, University Biobank Network Coordinator Budapest szilvia.magyarosi@gmail.com Prof. Maria Judit MOLNAR Director of Department Semmelweis University, Clinical and Research Centre for Molecular Neurology Budapest molnarmj@gmail.com Prof. Judit SANDOR Professor, Director of CELA Central European University, Center for Ethics and Law in Biomedicine (CELAB) medical law, bi-oethics 9 Nador CEU Budapest 1051 sandorj@ceu.hu ITALY / ITALIE Dr Angelo DEI TOS, apologised/excusé Director, Department of Oncology; Director of Anatomic Pathology General Hospital of Treviso, Oncology - Anatomic Pathology Piazza Ospedale, 1 31100 Treviso apdeitos@ulss.tv.it

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Dr Marilena MISSORICI International and Community Matters Garante per la protezione dei dati personali 76 via Merulana 00185 Roma JAPAN / JAPON Dr Yusuke INOUE Assistant Professor Department of Public Policy Institute of Medical Science University of Tokyo, Japan/Research ethics, medical law 4-6-1, Shirokanedai, Minato-ku Tokyo 108-8639 yinoue-kyt@umin.ac.jp LITHUANIA / LITUANIE Mr Meškys EDVINAS PhD Candidate Vilnius University Law Faculty Jogailos str. 9 / 1 01116 Vilnius edvinas.meskys@lawin.lt LUXEMBOURG Ms Dianne GOVE Information Officer Alzheimer Europe 145 route de Thionville 2611 Luxembourg dianne.gove@alzheimer-europe.org NETHERLANDS / PAYS-BAS Dr Jasper BOVENBERG Director Legal Pathways Klapheklaan 8, 2111 XS Aerdenhout jabovenberg@xs4all.nl Prof. Henriette ROSCAM ABBING Vice-Chair European Association of Health Law; Editor European Journal of Health Law Health Law 46 Oosterpark Amsterdam, 1092 An roscamabbing@zonnet.nl

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Mr Evert-Ben van VEEN Director/Senior consultant MedLawconsult, also participating on behalf of FEDERA PO Box 11500, 2502 AM, The Hague consult@medlaw.nl Dr Eric VERMEULEN Postdoc Vumc Medical Centre/The Netherlands Cancer Institute (NKI)/BBMRI.NL NKI-AVL, Division of Psychosocial Research and Epidemiology Plesmanlaan 121, 1066 CX Amsterdam PO Box 90203, 1006 BE Amsterdam e.vermeulen@vumc.nl NORWAY / NORVEGE Prof. Kjersti BAKKEN Associate professor, Department of Community Medicine, University of Tromso National Committee for Medical and Health Research Ethics (NEM) 9037 Tromso kjersti.bakken@uit.no Mr Per Holger BROCH Lawyer NTNU Oskar Braatens vei 5 7024 Trondheim perholger@helseradgiveren.no Prof. Dag BRUUSGAARD Chair National Committee for Medical Research Ethics National Committee for Medical Research Ethics Department of Health and Society, University of Oslo, Box 1130 Blindern 0318 Oslo dag.bruusgaard@medisin.uio.no Dr Hilde EIKEMO Advisor, Regional committee for medical and health research ethics - Central Norway REK Midt-Norge NTNU, Det Medisinske Fakultet Pb. 8905 7491 Trondheim hilde.eikemo@ntnu.no Dr Grethe FOSS, apologised/excusée Senior Advisor, The Norwegian Biotechnology Advisory Board The Norwegian Biotechnology Advisory Board Stortingsgaten 10 0105 Oslo grethe.foss@bion.no Dr Jacob HOLEN Director Norwegian National Committee for Medical Research Ethics Prinsens gate 18 0105 Oslo Jacob.Holen@etikkom.no

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Prof. Dr Knut RUYTER Director Regional Ethics for Medical and Healthcare Ethics Faculty of Medicine University of Oslo P.O. Box 1130, Blindern 0318 Oslo k.w.ruyter@medisin.uio.no Mrs Kristin Solum STEINSBEKK PhD Candidate / Assistant professor NTNU and HIST Trondheim, Norway / Bioethics - Biomedical science NTNU, Det medisinske fakultet Institut for samfunnsmedisin, Postboks 8905 7491 Trondheim POLAND / POLOGNE Dr Jakub PAWLIKOWSKI Scholar, Lecturer, Department of Ethics and Human Philosophy Medical University of Lublin, Poland;Expert Group for Genetic Molecular Research and Biobanking Ministry of Science and Higher Education Zaklad Etyki i Filozofii Czlowieka Uniwersytetu Medycznego ul. Szkolna 18 20-124 Lublin jpawlikowski@wp.pl Prof. Michal WITT Professor, Scientific Deputy Director International Institute of Molecular and Cell Biology Trojdena 4 02-109 Warsaw wittmich@man.poznan.pl PORTUGAL Prof. Henrique BARROS Professor/Director Department of Clinical Epidemiology Predictive Medicine and Public Health University of Department of Clinical Epidemiology, Predictive Medicine and Public Health University of Porto Medical School Alameda Prof. Hernani Monteiro 4200-319 Porto hbarros@med.up.pt ROMANIA / ROUMANIE Dr Aurora DRAGOMIRISTEANU Director of Romanian Registry of Hematopoietic Stem Cells Donors Romanian Registry of Hematopoietic Stem Cells Donors/Health Ethics 2-8 Constantin Caracas St, Sector 1 Bucharest, 011155 aurora.dragomiristeanu@rndvcsh.ro

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RUSSIAN FEDERATION / FEDERATION DE RUSSIE Prof. Vera IZHEVSKAYA Deputy Director Federal State Budgetary Institution "Research Centre for Medical Genetics" Russian Academy of Medical Sciences 1, Moskvorechie st. Moscow 115478 izhevskaya@med-gen.ru SPAIN / ESPAGNE Dr Manuel MORENTE Coordinator of the Spanish National Biobank Network - ISCIII (Bbmri.Es) Scientific Director of the Spanish National Cancer Centre Biobank Member of the Spanish National Institute of Health Charles III Ethic Committee Spanish National Cancer Centre -CNIO;Spanish National Biobank Network - ISCIII (BBMRI.ES) Spanish National Institute of Health Carles III - ISCIII Melchor Fernandez Almagro, 3 28029 - Madrid mmorente@cnio.es Dr Francesc PALAU, apologised/excusé Ciberer Scientific Director / Research Professor at the Spanish National Research Council (CSIC) Centre for Biomedical Network Research on Rare Diseases (Ciberer) /Neuromuscular Diseases-Rare Diseases-Genetics C/ Jaime Roig, 11 46010 Valencia fpalau@ibv.csic.es SWITZERLAND / SUISSE Ms Flora COLLEDGE PhD Candidate Institute for Biomedical Ethics University of Basel Missionstrasse 24 4055 Basel flora.colledgenibas.ch Dr Heidi HOWARD Senior research fellow/marie curie fellow University of Basel Institute for Biomedical Ethics, Ethical, Legal and Social Issues in genomics and biobanking Missionsstrasse 64 Basel, 4055 heidi.howard@unibas.ch Mrs Julie KUDYBA Global Data Privacy Officer Novartis Pharma AG/ Global Data Privacy Officer Novartis Campus WSJ-210 13.36 4002 Basel Julie.Kudyba@novartis.com

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Dr Delphine LAGARDE Head of Roche Basel Repository Biosample and Repository Management F. Hoffmann-La Roche Grenzachertrasse 124 4070, Basel delphine.lagarde@roche.com Dr Isabell VERDIER-BÜSCHEL Post-Doctoral Researcher Institute for Biomedical Ethics (IBMB) Universität Basel Missionsstrasse 24 4055 Basel i.verdier@unibas.ch Ms Aurélie VIVET, apologised/excusée Global Regulatory Affairs Manager CRO: Outcome, a Quintiles company Chemin du Glapin 6 1162 St-Prex Dr Rainer WARTH Chief Executive Officer Biobank suisse Effingerstrasse 40 Bern 3001 TURKEY / TURQUIE Prof. Berna ARDA Professor, History of Medicine and Ethics Department Ankara University Faculty of Medicine Morphology Campus, 2.nd Floor,Sıhhiye 06100 Ankara berna.arda@medicine.ankara.edu.tr UNITED KINGDOM / ROYAUME-UNI Dr Alan CLAMP Porto Medical School Human Tissue Authority 151 Buckingham Palace Road London SW1W 9SZ alan.clamp@hta.gov.uk Prof. Søren HOLM Professor of Bioethics, Centre for Social Ethics and Policy, School of Law UK Biobank Ethics and Governance Council University of Manchester Williamson Building, Oxford Road Manchester M13 9PL soren.holm@manchester.ac.uk

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UKRAINE Prof. Andriy POPANDOPULO Director of Laboratory of Cell and Tissue Cultivation Gusak's Institute of Urgent and Recovery Surgery NAMS of Ukraine Leninskiy avenue, 47 Donetsk 83045 pag.lctc@mail.ru EUROPEAN SCIENCE FOUNDATION / FONDATION EUROPEENNE DE LA SCIENCE (ESF) Mr Paul BECKERS MERIL Project Coordinator European Science Foundation 1 quai Lezay-Marnesia 67000 Strasbourg France pbeckers@esf.org Dr Kirsten STEINHAUSEN Science Officer, Medical Science Unit European Science Foundation 1 Quai Lezay Marnesia 67000 Strasbourg France ksteinhausen@esf.org Dr Stéphanie WYSS Head of Unit basic research, Division biology and medicine Swiss National Science Foundation (SNSF) Wildhainweg 21 3012 Bern Switzerland swyss@snf.ch Dr Ayşim YILMAZ Head of Division biology and medicine Swiss National Science Foundation (SNSF) Wildhainweg 21 3012 Bern Switzerland ayilmaz@snf.ch WHO / OMS Dr Stefano CRETIER Interne Organisation mondiale de la santé Unité Ethique et santé OMS/IER/ETH 3158 Avenue Appia 20 1211 Genève 27 Switzerland cretiers@who.int

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Dr Lynn WOODWARD Intern WHO Dept. of Ethics,Equity, Trade and Human Rights 20 Avenue Appia Geneva 1211 Switzerland woodwardl@who.int EUROPEAN COURT OF HUMAN RIGHTS / COUR EUROPÉENNE DES DROITS DE L’HOMME Mr Marc HEIDKAMP Registry of the European Court of Human Rights/Greffe de la Cour européenne des Droits de l’Homme

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PERMANENT REPRESENTATIONS / REPRESENTATIONS PERMANENTES

BOSNIA AND HERZEGOVINA / BOSNIE-HERZEGOVINE Mr Branko BABIC, Deputy to the Permanent Representative/Adjoint au Représentant permanent BULGARIA / BULGARIE Mr Andrey TEHOV, Ambassador and Permanent Representative/Ambassadeur et Représentant Permanent CROATIA / CROATIE Mr Ivan MINTAS, Deputy to the Permanent Representative/Adjoint à la Représentante permanente GEORGIA / GEORGIE Ms Ana DOBORJGINIDZE, Deputy to the Permanent Representative/Adjointe au Représentant permanent ITALY / ITALIE Mr Sergio BUSETTO, Ambassador and Permanent Representative/Ambassadeur et Représentant Permanent SWITZERLAND / SUISSE Mr Charles-Edouard HELD, Ambassador and Permanent Representative/Ambassadeur et Représentant Permanent TURKEY / TURQUIE Ms Gönül ERÖNEN, Deputy to the Permanent Representative/Adjointe au Représentant permanent Mr Basri YILDIZ, Deputy to the Permanent Representative/Adjointe au Représentant permanent MEXICO / MEXIQUE Mrs Lydia MADERO, Permanent Observer a.i./Observateur Permanent a.i. Mtro. Alejandro MARTÍNEZ PERALTA, Deputy to the Permanent Observer/Adjoint à l'Observateur Permanent

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PRESS / PRESSE

FRANCE

Mr Denis DURAND de BOUSINGEN Le Quotidien du Médecin ITALY / ITALIE

Mrs Samatha AGRO Agence ANSA SPAIN / ESPAGNE

Mr Javier AGUILAR Agence EFE + El País

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DH-BIO MEMBERS / MEMBRES DU DH-BIO

MEMBER STATES / ETATS MEMBRES

ANDORRA / ANDORRE Mr Pere PASTOR VILANOVA Juge, Cour Suprême de Justice, Avda de Tarragona, AD 500 Andorra la Vella, Andorra ARMENIA / ARMENIE Mr Igor MADOYAN President of National Center of Bioethics, n.24, ave Sayat-Nova, apt. 14, entrance 1, 0001 Yerevan AUSTRIA / AUTRICHE Dr Renate FALLY-KAUSEK Medical Officer, Federal Ministry for Health, Department III/6, Radetzkystrasse 2, 1030 Wien Dr Doris WOLFSLEHNER Head of the division “Bioethics” at the Federal Chancellery of the Republic of Austria, Ballhausplatz 2, 1014 Wien BELGIUM / BELGIQUE Mme Régine WILMOTTE Juriste au sein de la direction générale des Etablissements de Soins du Service public fédéral « Santé publique », Place Victor Horta 40, boite 10, 1060 Bruxelles BOSNIA AND HERZEGOVINA / BOSNIE-HERZEGOVINE Dr Serifa GODINJAK Head of Department for European Integration and International Cooperation, Sector for Health Ministry of Civil Affairs, Trg BiH 1, 71000 Sarajevo CROATIA / CROATIE Dr Vanja NIKOLAC Head of Service, Service for blood, tissues and cells inspection, Inspection Sector, Ministry of Health, Ksaver 200a, 10 000 Zagreb CZECH REPUBLIC / REPUBLIQUE TCHEQUE Prof. Pavel MARTASEK Professor of Medicine, Expert on Genetics, Dept. of Pediatrics, Center for Applied Genomics, 1st School of Medicine, Charles University, Ke Karlovu 2, Building D /2nd floor, 128 08 Prague 2

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DENMARK / DANEMARK Mrs Anna Skat NIELSEN, apologised/excusée Special Advisor, Center for Hospital Policy, The Ministry of the Interior and Health, 10-12 Slotsholmsgade, 1216 Copenhagen K ESTONIA / ESTONIE Prof. Hele EVERAUS Head of the Clinic, Haematology and Oncology Clinic, Tartu University, Tartu University Hospital, Puusepa 8, 51014 Tartu FINLAND / FINLANDE Jaakko HALTTUNEN Counsellor, Ministry for Foreign Affairs, Legal Service, Unit for Human Rights Courts and Conventions, PO Box 441, 00023 Government FRANCE M. André ALBERT Magistrat, Ministère de la Justice, Direction des Affaires Civiles et du Sceau, 13 Place Vendôme, 75001 Paris Mme Isabelle ERNY Attachée principale d'administration centrale, Ministère de la Santé, Direction Générale de la Santé, Secrétariat Général, Division droit, éthique et appui juridique, 14 avenue Duquesne, 75350 Paris 07 SP M. Emmanuel JAUFFRET Sous-direction des droits de l'homme, Direction des affaires juridiques, Ministère des affaires étrangè-res et européennes, 57, bd des Invalides, 75700 07 SP Paris Dr Jacques MONTAGUT Directeur de l'IFREARES, 20 route de Revel, 31400 Toulouse GEORGIA / GEORGIE Dr Givi JAVASHVILI Head of Family Medicine Department, State Medical Academy of Georgia, Chairman of the National Council on Bioethics, 29 I. Chachavadze Avenue, 0179 Tbilisi GERMANY / ALLEMAGNE Dr Karen BREMS Federal Ministry of Justice, Division III B 2, Mohrenstraße 37, 10117 Berlin Dr Daniela von BUBNOFF Federal Ministry of Education and Research, Division 612, Friedrichstraße 130 B, 10117 Berlin Prof. Elmar DOPPELFELD Président de l'Union des Comités d'Ethique, Ottostraße 12, 50859 Köln Dr Ingo HÄRTEL Federal Ministry of Health - Deputy Head Molecular Medicine & Bioethics Unit, Friedrichstraße 108, 10117 Berlin

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Prof. Dr. Dr. Thomas HEINEMANN Philosophisch-Theologische Hochschule Vallendar, Lehrstuhl für Ethik, Theorie und Geschichte der Medizin, Pallottistraße 3, 56179 Vallendar Mrs Andrea MITTELSTÄDT Federal Ministry of Justice, Division III B 2, Mohrenstraße 37, 10117 Berlin GREECE / GRECE Dr Stamatia GARANI-PAPADATOS Senior Lecturer, National School of Public Health, Avenue Alexandras 196, 11521 Athens HUNGARY / HONGRIE Dr Dorottya MOGYOROSI MD JD, head-counsellor professional, Secretariat of Minister of State of Health, Ministry of National Resources, Arany János u. 6-8., 1051 Budapest ICELAND / ISLANDE Laufey Helga GUDMUNDSDOTTIR Specialist, Department of Protection of Rights, Ministry of Welfare, Reykjavic IRELAND / IRLANDE Ms Angela O'FLOINN Dept of Health, Hawking House, Dublin 2 ITALY / ITALIE Prof. Adriano BOMPIANI Université catholique Polyclinique "A. Gemelli", Largo Gemelli 1, 00197 Roma LATVIA / LETTONIE Dr Vents SĪLIS Assistant Professor at Riga Stradins University, Department of Humanities, Dzirciema street 16, Riga 1007 LITHUANIA / LITUANIE Ms Jurate ZEREPKAITE Chief specialist, Lithuanian Bioethics Committee, Vilnius str. 33, 2001 Vilnius LUXEMBOURG Mr Jean-Paul HARPES membre du Comité National d'Ethique de la Recherche, 119, Val des Bons Malades, 2121 Luxembourg MALTA / MALTE Mme Mary Anne CIAPPARA B. Pharm., M. Phil. Pharmacist, Hon. Secretary, Bioethics Consultative Committee, Palazzo Castellania, 15 Merchant Street, Valleta

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REPUBLIC OF MOLDOVA / REPUBLIQUE DE MOLDOVA Lucia TURCAN Assistant Professor, PhD. State University of Medicines and Pharmacy "Nicolae Testemitanu", Clinical Pharmacology Depart-ment, Chisinau MONTENEGRO Dr Omer ADZOVIC Institute for Childhood Diseases, Medical Centre of Montenegro, Krusevac BB, 81000 Podgorica NETHERLANDS / PAYS-BAS Mr Arjan van DRIELEN, apologised/excusé Ministry of Health, Welfare and Sport, Directorate Public Health, Section Ethics, PO Box 20350, 2500 EJ Den Haag NORWAY / NORVEGE Camilla CLOSS WALMANN Senior Adviser, Department for Biotechnology and Health Law, Norwegian Directorate of Health, P.O.Box 7000 St Olavs plass, 0130 Oslo POLAND / POLOGNE Dr Jerzy UMIASTOWSKI Chairman of the Medical Ethics Committee of the Polish Medical Board, Local Medical Board, Ul. Sniadeckich 33, 80-204 Gdansk ROMANIA / ROUMANIE Prof. Dr. Vasile ASTARASTOAE Institutul de Medicina Legala, Buna Vestire nr. 4, 700455 Iasi Mr Gheorghe BORCEAN Vice-President of the Romanian College of Physicians, Spitalul Municipal Caransebes, str. Gradinilor nr. 36ª, CARANSEBES, jud. CARAS-SEVERIN 325400 Mrs Beatrice Gabriela IOAN Associate Professor, President of the Bioethics Commission of the Romanian College of Physicians, Institutul de Medicina Legala, str. Bunavestire nr. 4, Iasi RUSSIAN FEDERATION / FEDERATION DE RUSSIE Mr Boris YUDIN Director, Institute of Human Studies, Russian Academy of Sciences, Volkhonka 14, Moscow 119992 SAN MARINO / SAINT-MARIN Dr Luisa BORGIA Vice-President of National Committee of Bioethics of San Marino, Contrada Le Grazie, n.3, 62029 Tolentino (MC) SERBIA / SERBIE Prof. Dr Zvonko MAGIC Military Medical Academy in Belgrade, 11000 Belgrade

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SLOVAKIA / SLOVAQUIE Prof. Jozef GLASA MD, PhD, PhD; Institute of Pharmacology and Clinical Pharmacology, Slovak Medical University; National Reference Centre for Management of Chronic Hepatitis; Institute of Medical Ethics and Bioethics n.f.*; Ethics Committee, Ministry of Health SR; Limbová 12, 83303 Bratislava SLOVENIA / SLOVENIE Urh GROSELJ University Children's Hospital, University Medical Center Ljubljana, Bohoriceva 20, 1000 Ljubljana SPAIN / ESPAGNE Carlos ALONSO BEDATE Centro de Biología Molecular, Member of the National Committee for Bioethics, C/ Alberto Aguilera 21, 28015 Madrid Mª Concepción MARTIN ARRIBAS Subdirección General de Investigación en Terapia Celular y Medicina Regenerativa – Instituto de Sa-lud Carlos III – ISCIII, Avda. Monforte de Lemos 5, 28029 Madrid Prof. Carlos M. ROMEO – CASABONA Professor of Penal Law, Head, Inter-University Chair in Law and the Human Genome, Avda. de las Universidades 24, 48007 Bilbao Asier URRUELA MORA Professor for Criminal Law, Facultad de Derecho, Universidad de Zaragoza, C/ Pedro Cerbuna, 12, 50009 Zaragoza SWEDEN / SUEDE Ms. Tesi ASCHAN Legal Adviser, The National Board of Health and Welfare, Socialstyrelsen, 106 30 Stockholm TURKEY / TURQUIE Prof. Ergun ÖZSUNAY Professor of Civil, Comparative Law and EU Private law, Istanbul Culture University, Faculty of Law, Đstiklal cad. 233/1, Tunca Apt. Daire 7, 34430 Istanbul UKRAINE Prof Zoreslava SHKIRYAK-NYZHNYK Vice-president of Bioethics Committee of Academy of Medical Sciences, Chief of the Department of Family Health Problems, Academy of Postgraduate Education, Institute of Paediatrics, Obstetrics and Gynaecology, Manuilsky str., 8, 04050 Kyiv UNITED KINGDOM / ROYAUME-UNI Dr Mark BALE Principal administrator, Head of Genetics Branch; Scientific Development & Bioethics Division, Depart-ment of Health, Wellington House, Waterloo Road, London Road, London SE1 6LH

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PARTICIPANTS

STEERING COMMITTEE FOR HUMAN RIGHTS / COMITE DIRECTEUR POUR LES DROITS DE L’HOMME (CDDH) Mme Brigitte KONZ Vice-Présidente du tribunal d'arrondissement de Luxembourg, Cité judiqiaire, Bâtiment T.L, B.P. 15, 2080 Luxembourg EUROPEAN COMMITTEE (PARTIAL AGREEMENT) ON ORGAN TRA NSPLANTATION / COMITE EUROPEEN (ACCORD PARTIEL) SUR LA TRANSPLANTATION D’ ORGANES (CD-P-TO) Mme Eleni ZACHARI Consultant, 4 rue Jules Rathgeber, 67100 Strasbourg, France PARLIAMENTARY ASSEMBLY / ASSEMBLEE PARLEMENTAIRE Mr Luca VOLONTE Chairperson of the Group of the European’s people party (PPE/DC), to the Parliamentary Assembly of the Council of Europe, Camera dei deputati, Palazzo Montecitorio, 00186 Roma, Italy

OTHER PARTICIPANTS / AUTRES PARTICIPANTS

HOLY SEE / SAINT-SIEGE Mgr. Jacques SUAUDEAU Académie Pontificale pour la Vie, Via della Conciliazione, 3, I – 00193 Rome, Italy UNESCO Mrs Dafna FEINHOLZ KLIP Section de la bioéthique, Division de l'éthique des sciences et des technologies, UNESCO, 1 rue Miollis, 75732 Paris Cedex 15, France OECD / OCDE Mr Frédéric SGARD Project Administrator, Global Science Forum, OECD, 2, rue André-Pascal, 75775 Paris Cedex, France Mr James PHILP Administrator, Science and Technology Policy, OECD, 2, rue André-Pascal, 75775 Paris Cedex, France WHO / OMS Dr Marie-Charlotte BOUËSSEAU Technical officer, Ethics, Trade, Human Rights and Health Law, WORLD HEALTH ORGANIZATION, 20 Avenue Appia, CH-1211 Geneva 27, Switzerland

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OBSERVERS / OBSERVATEURS

AUSTRALIA / AUSTRALIE Samantha ROBERTSON Executive Director, Research Translation, National Health and Medical Research Council (NHMRC) National Health and Medical Research Council, GPO Box 1421, Canberra ACT 2601 EUROPEAN SCIENCE FOUNDATION / FONDATION EUROPEENNE DE LA SCIENCE (ESF) Prof. Isabel VARELA-NIETO Instituto Investigaciones Biomédicas "Alberto Sols", Neurobiology of Hearing Group, Arturo Duperier 4, 28029 Madrid, Spain CHURCH AND SOCIETY COMMISSION OF THE CONFERENCE OF EUROPEAN CHURCHES/COMMISSION EGLISE ET SOCIETE DE LA CONFERE NCE DES EGLISES EUROPEENNES (KEK) Pasteur Richard FISCHER Secrétaire Exécutif, 8 rue du Fossé des Treize, 67000 Strasbourg, France

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SECRETARIAT / SECRÉTARIAT

Directorate General Human Rights and Rule of Law Direction Générale Droits de l’Homme et Etat de Dro it

Bioethics Department / Service de la Bioéthique

bioethics.biobanks@coe.int Mr Carlos de SOLA, Head of Bioethics Department / Chef du Service de la Bioéthique, Tel: +33 (0) 388 41 24 38, E-mail: carlos.desola@coe.int Ms Laurence LWOFF, Secretary of the DH-BIO / Secrétaire du DH-BIO, Tel: +33 (0) 388 41 22 68, E-mail: laurence.lwoff@coe.int Ms Lindsay YOUNGS, Administrator / Administratrice, Tel: +33 (0) 388 41 21 63, E-mail: lindsay.youngs@coe.int Mr Kristof VAN ASSCHE, Administrator / Administrateur, Tel: +33 (0) 390 21 42 09, E-mail: kristof.vanassche@coe.int Ms Tatiana WINTER, Assistant / Assistante, Tel : +33 (0) 388 41 33 67, E-mail: tatiana.winter@coe.int Ms Catherine FORNÉ, Assistant / Assistante, Tel: +33 (0) 388 41 22 20, E-mail: catherine.forne@coe.int Mr Sébastien SERVE, Trainee / Stagiaire

Interpreters / Interprètes Mrs Amanda BEDDOWS-LARIVIERE Mrs Sylvie BOUX Mr William VALK