Ethical aspects of stem cell repositories and stem cell databases
17 February 2005, Brussels

Introduction
EuroStemCell is a four-year Integrated Project of the European Union's Sixth Framework Programme , and aims to build the foundations for regenerative medicine. Scientific research is the backbone of our work programme, but examination and discussion of the ethical and societal issues relating to stem cell research are also critical if we are to successfully build these foundations.

Recognising this, EuroStemCell has established an Ethics Advisory Panel and built an Ethics and Societal Issues Flagship Project into its work programme. This paper reports on Ethical aspects of stem cell repositories and stem cell databases , the first of a series of four workshops in this Flagship Project.

Workshop themes
Key issues discussed at this workshop were:

informed consent
safety
security
confidentiality
traceability
fair access

Participants also discussed the interpretation and implementation of European directives on data protection and tissue procurement. These directives will affect the handling of ethical problems raised by acquisition, processing, safety and security as well as access to tissues and information. Many member states have not yet decided on national implementation of the tissue procurement directive, and the outcome is likely to vary a great deal among nations.

The technicalities of maintaining and running such repositories and banks, and the research and development necessary to obtain and process the stem cell lines stored in the repositories, were outside the scope of this workshop.

Countries represented

Belgium
Czech Republic
Denmark
England

France
Germany
Luxembourg
Netherlands

Portugal
Scotland
Slovakia
Slovenia

Spain
Sweden
Wales

Participants
50 participants attended this workshop. Like the invited speakers, they represented the spectrum of communities interested in stem cell banking - from parliamentarians and policy-makers to patient groups, stem cell researchers from other EU-funded projects and those responsible for stem cell repositories and databanks.

Programme

Welcome and introduction

13.00–13.05	Göran Hermerén, Lund University, Sweden
13.05–13.15	Philippe Busquin, European Parliament, Brussels
13.15–13.25	Etienne Magnien, European Commission, Brussels

Session I: State of the art

13.25–13.50	Cell banking of human stem cell lines Glyn Stacey, UK Stem Cell Bank
13.50–14.15	Stem cells in cord blood banks Eliane Gluckman, Hôpital St Louis, Paris
14.15–15.15	Panel 1: procedures and practices (with discussion) The state of the art - problems and possibilities in different European countries. Angela Barnie, Spanish National Stem Cell Bank, Granada Jozef Glasa , Slovakia Josef Kure, Masaryk University in Brno , Czech Republic Joze Trontelj, University Medical Centre of Ljubljana , Slovenia Henk van der Zanden, Europdonor Foundation and STEMNET
15.15–15.40	Coffee
15.40–16.05	Patient organization perspectives Mary Baker, European Parkinson's Disease Association, London
16.05–17.00	Panel 2: legal background (with discussion) Interpretation and implementation of relevant laws and directives. Eduardo Fernandez Zincke, EC DG Health and Consumer Protection; Elisabeth Rynning, Sweden.

Session II: Problems and solutions

17.00–17.25	Ethical problems raised by stem cell repositories and data banks Sören Holm, Law School, Cardiff University
17.25–17.50	How to find solutions Anne McLaren, Cambridge
17.50–18.10	What is next – an ethical framework for stem cell research John Harris, Institute of Medicine Law and Bioethics, University of Manchester
18.10–18.45	Panel 3: A glance at the future (with discussion) The perspectives of research, as well as some national and international councils. Giuseppe Testa, Dresden Univeristy of Technology Laurance Lwoff, Council of Europe Rudolf Teuwsen, National Ethics Council, Germany
18.45–18.50	Introduction to Concluding Discussion Göran Hermerén
18.55–19.30	Concluding Discussion

Ethical aspects of stem cell repositories and stem cell databases17 February 2005, Brussels

Ethical aspects of stem cell repositories and stem cell databases
17 February 2005, Brussels