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Biobanks in Europe: Prospects for Harmonisation and Networking

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Biobanks in Europe: Prospects for Harmonisation and Networking Biobanks in Europe: Prospects for Harmonisation and Networking Eleni Zika, Daniele Paci, Tobias Schulte in den Bäumen, Anette Braun, Sylvie RijKers- Defrasne, Mylène Deschênes, Isabel Fortier, Jens Laage-Hellman, Christian A. Scerri, Dolores Ibarreta EUR 24361 EN - 2010 The mission of the JRC-IPTS is to provide customer-driven support to the EU policy-making process by developing science-based responses to policy challenges that have both a socio- economic as well as a scientific/technological dimension. European Commission Joint Research Centre Institute for Prospective Technological Studies Contact information Address: Edificio Expo. c/ Inca Garcilaso, 3. E-41092 Seville (Spain) E-mail: [email protected] Tel.: +34 954488318 Fax: +34 954488300 http://ipts.jrc.ec.europa.eu http://www.jrc.ec.europa.eu Legal Notice Neither the European Commission nor any person acting on behalf of the Commission is responsible for the use which might be made of this publication. Europe Direct is a service to help you find answers to your questions about the European Union Freephone number (*): 00 800 6 7 8 9 10 11 (*) Certain mobile telephone operators do not allow access to 00 800 numbers or these calls may be billed. A great deal of additional information on the European Union is available on the Internet. It can be accessed through the Europa server http://europa.eu/ JRC57831 EUR 24361 EN ISBN 978-92-79-15783-7 ISSN 1018-5593 DOI 10.2791/41701 Luxembourg: Publications Office of the European Union © European Union, 2010 Reproduction is authorised provided the source is acknowledged Printed in Spain Reviewers Jane Kaye (University of Oxford, UK) Thorkild I.A. Sorensen (Institute of Preventive Medicine, Denmark) Jasper Bovenberg (Legal Pathways Institute for Health and Bio-Law, Aerdenhout, The Netherlands) Acknowledgments IPTS is grateful for the help and input received from Emmanuelle Rial-Sebbag, Anne Bahr, Latifa Bouyakoub, Laurent Bowen-Squires and Francoise Garnier, on the section of biobanking activities in France, and from Pilar Nicolás on the section on biobanking activities in Spain. IPTS would also like to specially thank the experts who took the time to respond to the survey and provided input at the workshops organised in the context of the study. i TABLE OF CONTENTS TABLE OF CONTENTS ......................................................................................................................... II EXECUTIVE SUMMARY .......................................................................................................................V 1 INTRODUCTION............................................................................................................................. 9 1.1 Objectives ................................................................................................................................ 10 1.2 Definition and scope ................................................................................................................ 10 1.3 Identification of biobanks and survey...................................................................................... 11 2 BIOBANKING ACTIVITY IN EUROPE AND WORLWIDE................................................... 15 2.1 Survey of European biobanks .................................................................................................. 15 2.1.1 Biobanks composition and purpose ............................................................................... 16 2.1.2 Sample and data collection ............................................................................................ 19 2.1.3 Access............................................................................................................................ 22 2.1.4 Consent and privacy ...................................................................................................... 23 2.1.5 Scientific Output............................................................................................................ 26 2.2 Biobanks world-wide............................................................................................................... 27 2.2.1 Biobanks in Northern Europe ........................................................................................ 27 2.2.1.1 Biobanks in Sweden............................................................................................... 28 2.2.1.2 Biobanks in Norway .............................................................................................. 37 2.2.1.3 Biobanks in Denmark ............................................................................................ 39 2.2.1.4 Biobanks in Finland............................................................................................... 42 2.2.1.5 Biobanks in Iceland ............................................................................................... 45 2.2.1.6 Biobanks in the Baltic countries ............................................................................ 50 2.2.1.7 Biobanks in the UK................................................................................................ 52 2.2.2 Biobanks in Eastern Europe........................................................................................... 59 2.2.2.1 Biobanks in Hungary ............................................................................................. 59 2.2.2.2 Biobanks in Romania............................................................................................. 62 2.2.3 Biobanks in Central Europe........................................................................................... 65 2.2.3.1 Biobanks in Austria ............................................................................................... 65 2.2.3.2 Biobanks in Belgium ............................................................................................. 66 2.2.3.3 Biobanks in Germany ............................................................................................ 69 2.2.3.4 Biobanks in the Netherlands .................................................................................. 76 2.2.4 Biobanks in Southern Europe ........................................................................................ 83 2.2.4.1 Biobanks in Italy.................................................................................................... 83 2.2.4.2 Biobanks in France ................................................................................................ 85 2.2.4.3 Biobanks in Spain.................................................................................................. 88 2.2.5 Biobanks beyond Europe............................................................................................... 89 2.2.5.1 United States of America....................................................................................... 89 2.2.5.2 Canada ................................................................................................................. 100 2.2.5.3 Asia...................................................................................................................... 105 Japan ............................................................................................................ 106 Singapore ..................................................................................................... 107 China............................................................................................................ 108 Taiwan ......................................................................................................... 109 South Korea ................................................................................................. 109 2.2.5.4 Other Large Scale Biobanks Initiatives ............................................................... 110 3 BIOBANK NETWORKING IN EUROPE: CHALLENGES AND OPPORTUNITIES ........ 115 3.1 Challenges ............................................................................................................................. 115 3.1.1 Technological challenges............................................................................................. 115 3.1.2 Legal, Regulatory and Ethical Requirements .............................................................. 117 3.1.3 Funding and Financial Maintenance............................................................................ 130 3.1.4 Public involvement, information, acceptance.............................................................. 131 ii 3.2 Options for a European Biobank Networking Platform......................................................... 134 3.2.1 Networking among “smaller” biobanks....................................................................... 137 4 CONCLUSIONS............................................................................................................................ 143 4.1 Biobanking in Europe ............................................................................................................143 4.2 Networking and Harmonisation............................................................................................. 143 4.2.1 Regulatory aspects....................................................................................................... 145 4.2.2 Funding sustainability.................................................................................................. 148 4.2.3 Appropriate benefit sharing and public engagement in biobanking activities
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