2002 Strasbourg - European Society of Human Genetics

EAGS Annual Conference and Meeting
Monday, May 27, 2002
Room Bartholdi
9.30-12.30 Closed session for representatives from patient groups only.
Chair: Ysbrand Poortman.
A joint Venture for European Patient Organisations
The developments we see in the fields of genetics, molecular biology and biotechnology are creating new
opportunities and posing new challenges. Increasingly patient groups are getting involved at both the political
and the practical level in the debate about the steps necessary to realise the potential of this new knowledge,
whilst at the same time minimising the risks that it will be misused.
There are many ways in which the patient and user perspective can make a difference – lobbying to change
legislation, participation in scientific meetings, joining committees to decide on the allocation of resources and
so on. All of these put increasing demands on our time and resources, making it ever more difficult to respond
to the many and varied demands that are made on us in ways that are reasoned and sensible, so that our
views and standpoints are well formulated and our requests meet with success.
As a first step towards addressing this problem we propose a joint venture, which takes subjects and activities
of common interest in the fields of genetics, molecular biology, initially at least affiliated to the European
Patient’s Forum currently being developed. If this proved to be a beneficial partnership the link would remain
if not there would be no point in containing it. The type of issue which might be addressed might include
genetic screening programmes, the (Busquin) initiative on Biotechnology in the EU, intellectual property etc.
Funding would have to be sought from the EU for a range of projects to educate and raise awareness of
the issues and possibilities raised by new knowledge in these fields – for example the importance of early
and accurate diagnosis, access to medicines etc. Communication would be electronic (including the use of
specially established websites) as well as face to face to ensure prompt access and response to EU wide
initiatives and programmes.
Creating consensus amongst patient groups in genetics and biotechnology is something which EAGS has
been seeking to achieve for many years. Building on this and creating an inclusive platform would greatly
strengthen the impact of the patient voice in EU decision making. Eventually we may see the evolution of an
European Genetic Patient’s Alliance.
We would value your views and opinions.
14.00 DNA diagnostics, looking to the future. A joint EAGS/European diagnostics manufacturers association
(EDMA) seminar
Introduction and welcome from the Chair
Alastair Kent: President, EAGS
14.10 What do clinicians need from a diagnostic laboratory?
Dr.Domenico Coviello, Laboratorio di Genetica Medica, Milan
14.30 DNA Based Diagnostics: Issues in monogenic and common complex diseases and pharmacogenetic.
Dr Klaus Lindpainter, Head of Genetics, F Hoffman La Roche Ltd, Switzerland.
15.00 Providing a service, an industry perspective.
Dr Erik Tambuyzer, Vice-President, Corporate Affairs Europe, Genzyme Corporation, Belgium.
15.30 Measuring and maintaining quality in DNA diagnostic laboratories.
Dr Rob Elles, Head of DNA laboratory, St Mary’s Hospital, Manchester.
16.00 The need for fast and accurate diagnosis – the patient perspective.
Ysbrand Poortman, Formerly Executive Director, VSOP, Netherlands.
16.30 Concluding remarks
John Place, Executive Director, EDMA, Belgium.
16.45 Close
For more information contact Genetic Interest Group, Unit 4D, Leroy House, 436 Essex Road, London N1 3QP.
Tel: +44 207 704 3141, Fax: +44 207 359 1447, email: mail@gig.org.uk
21