Programme, videos, presentations
A conference organised by the European Commission
in Brussels on 6th & 7th May 2004.
The table below
contains direct links to:
- The presentations of the speakers (click
on the name of the speaker considered);
- Each of the 25 recommendations ("R.x",
the complete translation of the text is available in 19 languages
in the section The 25 recommendations);
- The video of each session of the conference,
in the "original", "English", "German"
and "French" version.
| 6 May, 8:30 –
18:00 |
| 9:30–10:15 |
|
| 9:30-9:40 |
Special address from
Achilleas Mitsos,
European Commission, Director-General, Research DG |
| 9:40-9:50 |
The work of the group
Eryl McNally,
Member of the European Parliament, Vice President of The European
Parliament’s Technology Assessment Unit STOA |
| |
Testimony
Hélène Tack,
Association Française contre les Myopathies
Bill Albert, Chair of the Norfolk Coalition
of Disabled People |
| 10:10–11:00 |
|
| Chair: |
Octavi Quintana Trias, European
Commission, Director for health research, Research DG |
| 10:10-10:20 |
Genetic testing in a medical and research environment, differences
and specific needs
Klaus
Lindpaintner (
495 Kb), Roche Genetics, Hoffman-La Roche |
| 10:20-10:30 |
Commentator
John Harris, University
of Manchester |
| 10:20-10:55 |
Debate |
| 11:25–12:20 |
|
| Chair: |
Marisa
Papaluca (
1,2 Mb), European Agency for the Evaluation of Medicinal Products
(EMEA) |
| 11:25-11:40 |
Genetic testing, biobanks and pharmacogenetics
Anne
Cambon-Thomsen (Rapporteur) (
445 Kb), Inserm
Detlef
Niese (
476 Kb), Novartis |
| 11:40-11:50 |
Commentator
Jaanus
Pikani (
178 Kb), Estonian Genome Project Foundation |
| 11:50-12:15 |
Debate |
| 12:20–13:10 |
|
| Chair: |
Philippe Renaudiere, European Commission,
Head of unit Data protection, Internal Market DG |
| 12:20-12:30 |
Data protection issues, what to protect and at what level?
Henriette
Roscam Abbing (
540 Kb), University of Utrecht |
| 12:30-12:40 |
Commentator
Spiro Simitis, President
German Ethics Council |
| 12:40-13:05 |
Debate |
| 14:30–15:25 |
Session 5
Informed consent and genetic testing
 
(~ 7,5 Mb)
Recommendations: R.6,
R.8,
R.9,
R.10,
R.14,
R.15,
R.22,
R.23,
R.24,
R.25 |
| Chair: |
Laurence
Lwoff (
82 Kb), Council of Europe |
| 14:30-14:40 |
Ethical implications of genetic testing: would genetic testing
need a new kind of informed consent? From competent individuals
to children and vulnerable persons.
Jan-Helge
Solbakk (
339 Kb), University of Oslo |
| 14:40-14:50 |
Commentator
Arthur Caplan, University
of Pennsylvania |
| |
Debate |
| 15:25–15:45 |
|
| 15:25-15:35 |
Philippe Busquin, Commissioner for
Research |
| 15:35-15:45 |
Debate |
| 15:45–16:40 |
Session 7
Avoiding Discrimination and genetic counselling
(~ 6,2 Mb)
Recommendations: R.1,
R.2,
R.3,
R.4,
R.5,
R.6,
R.8,
R.9,
R.11,
R.14,
R.12,
R.13,
R.25 |
| Chair: |
Alex Capron, World Health Organisation
(WHO) |
| 15:45-15:55 |
Genetic councelling and how to avoid discrimination based
on genetic data?
Alastair Kent,
Director, Genetic Interest group |
| 15:55-16:05 |
Commentator
George Gaskell, London School of Economics |
| 16:05-16:35 |
Debate |
| 17:05–18:00 |
Session 8
Civil society perspective
(~ 6,5 Mb)
Recommendations: R.1,
R.3,
R.4,
R.5,
R.7,
R.8,
R.11,
R.13,
R.16,
R.18 |
| Chair: |
Rainer Gerold, European Commission,
Director "Science and Society", Research DG |
| 17:05-17:15 |
Rare diseases, societal issues
Erik Wendel,
European Patients Voice |
| 17:15-17:25 |
Commentator
Ludger Honnefelder,
University of Bonn |
| 17:25-17:55 |
Debate |
| 7 May, 9:15-13:30 |
| 9:15–10:10 |
Session 9
Education, Information and Professional requirements
(~ 6,8 Mb)
Recommendations: R.3,
R.4,
R.5,
R.6,
R.7,
R.10,
R.14,
R.15,
R.16,
R.17,
R.21,
R.23 |
| Chair: |
Per Sørup, European Commission,
Institute for Prospective Studies, Joint Research Centre,
Sevilla |
| 9:15-9:25 |
Genetic testing and education
Jean-Jacques
Cassiman (
948 Kb), University of Leuven |
| 9:25-9:35 |
Commentator
Ségolène
Aymé (
66 Kb), Inserm and European Society of Human Genetics, Chair
of the Professional and Public Policy Committee |
9:35-10:00 |
Debate |
| 10:05–10:55 |
|
| Chair: |
Elettra Ronchi, Organisation
for Economic Co-operation and Development (OECD) |
| 10:05-10:15 |
Genetic testing, what needs to be regulated?
Eric
Tambuyzer (
401 Kb), Chair Healthcare Board EuropaBio, Senior Vice-President,
Genzyme |
| 10:15-10:25 |
Commentator
Judit Sandor
(
140 Kb), University of Budapest |
| 10:25-10:50 |
Debate |
| 11:25–13:30 |
|
| Chair: |
ERYL MCNALLY, MEP, Vice President
STOA |
| 11:25-11:40 |
Round Table
Summary stakeholders:
Patients: Bernadette Moran,
Huntington Disease Association and Genetic Inherited Disorder
Organisation (GIDO)
Industry: Heinrich Schulte, endokrinologicum
Hamburg
Academia: Domenico
Coviello (
53 Kb), ICP-University Hospital of Milan
|
| 11:40-12:00 |
Debate |
| 12:00-12:40 |
Reply implementing organisations
Elettra
Ronchi (
524 Kb), OECD
Laurence
Lwoff (
82 Kb), Council of Europe
Marisa
Papaluca (
1,2 Mb), EMEA
Niovi Ringou, Internal Market DG
Barbara
Rhode (
693 Kb) – European Commission, Head of unit “Ethics
and Science”, Research DG |
| 12:40-13:15 |
Debate |
| 13:15-13:30 |
Final remarks from the Chair of the group
Eryl
McNally |
Working languages: English, French and German
(simultaneous translation)
|