List of participants - Conseil de l`Europe

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’Europe
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 Coordination 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
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
2
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 génomique 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 Coordination 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” - responsable 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
3
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 Expert 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 Genome/Coordinatrice des projets de recherche, Chaire Inter-universitaire de Droit et Génome Humain
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
4
Prof. Kurt ZATLOUKAL
Coordinator of BBMRI/Coordinateur du BBMRI
Institute of Pathology
Medical University of Graz
Auenbruggerplatz 25
8036 Graz
Austria
GENERA L ROUNDTABLE / TABLE RONDE GENERA LE
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
5
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 Infrastructure (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
6
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
[email protected]
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
[email protected]
BELGIUM / BELGIQUE
Dr Fadi ABDULSATER
Coordinateur de la Biobanque IPG
institut de pathologie et génétique
25, avenue Georges lemaître
6041-Gosselies
[email protected]
Dr Julian COCKBAIN
Consultant European Patent Attorney
Independent/Patent attorney
Hoogpoort 28A101
9000 Gent
[email protected]
Dr Ligia CRACIUN
Biobank manager, Anatomical Pathology Department
Jules Bordet Institute
125 Boulevard de Waterloo
Brussels 1000
[email protected]
Mrs Céline DEGAILLIER
Assistant de projet pour la Tumorothèque Virtuelle Belge
Registre du Cancer
Rue Royale 215 / 7
1210 Bruxelles
[email protected]
7
Prof. Nadine ECTORS
Coordinator Activity Center Biobanking University
University / University Hospitals Leuven - Belgium ; participating in Flemish initiative and National Belgian initiative for biobanking ; Coordinator AC Biobanking University
University Hospitals Leuven
Herestraat 49
3000 Leuven
[email protected]
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
[email protected]
Dr Isabelle HUYS
Docent patent law, faculty of pharmaceutical sciences, KULeuven
Katholieke Universiteit Leuven
Herestraat 49, box 521
3000 Leuven
[email protected]
Ms Marion MAETENS
Translational Research Manager
Jules Bordet Institute
Bd de Waterloo 127
1000 Brussels
[email protected]
Prof. Myriam REMMELINK
Clinical Head, Department of Pathology
HOPITAL ERASME, Pathology Department
808 Route de Lennik
1070 Brussels
[email protected]
Prof. Isabelle SALMON
Head of Department, Department of Pathology
HOPITAL ERASME, Pathology Department
808 Route de Lennik
1070 Brussels
[email protected]
Prof. Elke SMITS
Liaison Officer Clinical Research Center Antwerp
Antwerp Univesity Hospital
Wilrijkstraat 10
2650 Edegem
[email protected]
Mr Alex SPINETTE
Laborantin
Institut Jules Bordet
121, BD Waterloo
Bruxelles, 1000
8
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 material)
Hoogpoort 28 A101
9000 Gent
[email protected]
Mr Michiel VERLINDEN
Doctorandus, Faculty of Pharmaceutical Sciences
KU Leuven - Expertise in legal framework of biobanks
Herestraat 49, box 521
3000 Leuven
[email protected]
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
[email protected]
FINLAND / FINLANDE
Dr Riitta BURRELL
Senior Officer, Legal Affairs
National Supervisory Authority for Welfare and Health
Valvira, P.O. Box 210
FI-00531 Helsinki
[email protected]
Dr Pirjo PENNANEN
Head of Unit, Medical Counsellor
National Supervisory Authority for Welfare and Health, Valvira
PB 210
00531 Helsinki
[email protected]
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
[email protected]
9
Ms Soini SIRPA
Senior legal adviser
Institute for Health and Welfare (THL) & BBMRI Finland
Mannerheimintie 166, POB 30
00271 Helsinki
[email protected]
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
[email protected]
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
[email protected]
Mrs Sylvie BACH
Professeur Agrégé de Philosophie
Lycée Jean Rostand
5 Rue Edmond Labbe
67084 Strasbourg
[email protected]
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
[email protected]
Ms Georgia BUSCAGLIA
Student
Syracuse University
Strasbourg
10
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
[email protected]
Ms Samantha HALLER
Doctorante (Université de STRASBOURG)
UPR9022 CNRS
15 rue René Descartes
67084 Strasbourg
[email protected]
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
[email protected]
Mr Romain HOFFMANN
Etudiant
Strasbourg
[email protected]
Dr Daria JULKOWSKA
Project manager
GIS Institut des Maladies Rares
Plateforme Maladies Rares
96 Rue Didot
75014 Paris
[email protected]
Ms Laura JUNG
Doctorant (équipe Prof. Stéphane Viville)
IGBMC Programmme Biologie du développement et cellules souches
1 rue Laurent Fries
67400 Illkirch
[email protected]
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
[email protected] / [email protected]
11
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
[email protected]
Mr Damien MARECHAL
PhD student
Recherche fondamentale
1 rue Laurent Fries
67404 Illkirch Cedex
[email protected]
Mrs Sandra MEYER
PhD 1st year
EA4438-Equipe signalisation et cancer de la prostate
1 place de l'hôpital
67000 strasbourg
[email protected]
Mr Gregory OWCARZ
Professor
Syracuse University
Strasbourg
[email protected]
Dr Muhammad RAFIQ
Student
INSERM/Physiopathology
Faculté de médecine
11 rue Humann
67000 Strasbourg
[email protected]
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
[email protected]
12
GERMANY / ALLEMAGNE
Dr Joachim VETTER
Head of Office
German Ethics Council
Jaegerstrasse 22/23
10117 Berlin
[email protected]
Prof. Matthias WJST
PI, CPC/ILBD
Helmholtz Zentrum München
Ingolstädter Landstr 1
85764 München-Oberschleissheim
[email protected]
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
[email protected]
HUNGARY / HONGRIE
Ms Szilvia MAGYAROSI
Biobank Coordinator
Semmelweis University, University Biobank Network Coordinator
Budapest
[email protected]
Prof. Maria Judit MOLNAR
Director of Department
Semmelweis University, Clinical and Research Centre for Molecular Neurology
Budapest
[email protected]
Prof. Judit SANDOR
Professor, Director of CELA
Central European University, Center for Ethics and Law in Biomedicine (CELAB) medical law, bioethics
9 Nador
CEU
Budapest 1051
[email protected]
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
[email protected]
13
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
[email protected]
LITHUANIA / LITUANIE
Mr Meškys EDVINAS
PhD Candidate
Vilnius University Law Faculty
Jogailos str. 9 / 1
01116 Vilnius
[email protected]
LUXEMBOURG
Ms Dianne GOVE
Information Officer
Alzheimer Europe
145 route de Thionville
2611 Luxembourg
[email protected]
NETHERLANDS / PAYS-BAS
Dr Jasper BOVENBERG
Director
Legal Pathways
Klapheklaan 8, 2111 XS Aerdenhout
[email protected]
Prof. Henriette ROSCAM ABBING
Vice-Chair European Association of Health Law; Editor European Journal of Health Law
Health Law
46 Oosterpark
Amsterdam, 1092 An
[email protected]
14
Mr Evert-Ben van VEEN
Director/Senior consultant
MedLawconsult, also participating on behalf of FEDERA
PO Box 11500, 2502 AM,
The Hague
[email protected]
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
[email protected]
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
[email protected]
Mr Per Holger BROCH
Lawyer
NTNU
Oskar Braatens vei 5
7024 Trondheim
[email protected]
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
[email protected]
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
[email protected]
Dr Grethe FOSS, apologised/excusée
Senior Advisor, The Norwegian Biotechnology Advisory Board
The Norwegian Biotechnology Advisory Board
Stortingsgaten 10
0105 Oslo
[email protected]
Dr Jacob HOLEN
Director
Norwegian National Committee for Medical Research Ethics
Prinsens gate 18
0105 Oslo
[email protected]
15
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
[email protected]
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
[email protected]
Prof. Michal WITT
Professor, Scientific Deputy Director
International Institute of Molecular and Cell Biology
Trojdena 4
02-109 Warsaw
[email protected]
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
[email protected]
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
[email protected]
16
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
[email protected]
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
[email protected]
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
[email protected]
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
[email protected]
Mrs Julie KUDYBA
Global Data Privacy Officer
Novartis Pharma AG/ Global Data Privacy Officer
Novartis Campus WSJ-210 13.36
4002 Basel
[email protected]
17
Dr Delphine LAGARDE
Head of Roche Basel Repository
Biosample and Repository Management
F. Hoffmann-La Roche
Grenzachertrasse 124
4070, Basel
[email protected]
Dr Isabell VERDIER-BÜSCHEL
Post-Doctoral Researcher
Institute for Biomedical Ethics (IBMB)
Universität Basel
Missionsstrasse 24
4055 Basel
[email protected]
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
[email protected]
UNITED KINGDOM / ROYAUME-UNI
Dr Alan CLAMP
Porto Medical School
Human Tissue Authority
151 Buckingham Palace Road
London SW1W 9SZ
[email protected]
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
[email protected]
18
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
[email protected]
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
[email protected]
Dr Kirsten STEINHAUSEN
Science Officer, Medical Science Unit
European Science Foundation
1 Quai Lezay Marnesia
67000 Strasbourg
France
[email protected]
Dr Stéphanie WYSS
Head of Unit basic research, Division biology and medicine
Swiss National Science Foundation (SNSF)
Wildhainweg 21
3012 Bern
Switzerland
[email protected]
Dr Ayşim YILMAZ
Head of Division biology and medicine
Swiss National Science Foundation (SNSF)
Wildhainweg 21
3012 Bern
Switzerland
[email protected]
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
[email protected]
19
Dr Lynn WOODWARD
Intern
WHO
Dept. of Ethics,Equity, Trade and Human Rights
20 Avenue Appia
Geneva 1211
Switzerland
[email protected]
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
20
PERMANENT REPRESENTATIONS / REPRESE NTATIONS
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,
Représentant Permanent
Ambassador
and
Permanent
Representative/Ambassadeur
et
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
21
PRESS / P RESSE
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
22
DH-BIO MEMBERS / ME MBRES 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
23
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 étrangères 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
24
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
25
REPUBLIC OF MOLDOVA / REPUBLIQUE DE MOLDOVA
Lucia TURCAN
Assistant Professor, PhD.
State University of Medicines and Pharmacy "Nicolae Testemitanu", Clinical Pharmacology Department, 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
26
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 Salud 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, Department of Health, Wellington House, Waterloo Road, London Road, London SE1 6LH
27
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 TRANSPLANTATION / 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
28
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 CONFERENCE DES EGLISES
EUROPEENNES (KEK)
Pasteur Richard FISCHER
Secrétaire Exécutif, 8 rue du Fossé des Treize, 67000 Strasbourg, France
29
SECRE TARIA T / SECRÉ TARIA T
Directorate General Human Rights and Rule of Law
Direction Générale Droits de l’Homme et Etat de Droit
Bioethics Department / Service de la Bioéthique
[email protected]
Mr Carlos de SOLA, Head of Bioethics Department / Chef du Service de la Bioéthique, Tel: +33 (0) 388
41 24 38, E-mail: [email protected]
Ms Laurence LWOFF, Secretary of the DH-BIO / Secrétaire du DH-BIO, Tel: +33 (0) 388 41 22 68, Email: [email protected]
Ms Lindsay YOUNGS, Administrator / Administratrice, Tel: +33 (0) 388 41 21 63, E-mail:
[email protected]
Mr Kristof VAN ASSCHE, Administrator / Administrateur, Tel: +33 (0) 390 21 42 09, E-mail:
[email protected]
Ms Tatiana WINTER, Assistant / Assistante, Tel : +33 (0) 388 41 33 67, E-mail: [email protected]
Ms Catherine FORNÉ,
[email protected]
Assistant
/
Assistante,
Tel:
+33
Mr Sébastien SERVE, Trainee / Stagiaire
Interpreters / Interprètes
Mrs Amanda BEDDOWS-LARIVIERE
Mrs Sylvie BOUX
Mr William VALK
30
(0)
388
41
22
20,
E-mail: