On 6th and 7th May 2004, the European Commission invited
all interested parties to attend a European citizens' and stakeholders'
conference, held in Brussels, to discuss the ethical,
social and legal aspects of human genetic testing in research
and healthcare applications.
The conference was based on a report and 25 recommendations made
by a high-level, independent Expert Group, which had been invited
by the European commission to discuss a number of issues relating
to human medical genetic testing.
The Expert Group
The Group, chaired by Eryl McNally, Member of the European Parliament,
and coordinated by Prof. Anne Cambon-Thomsen, has worked for over
a year to produce the report and the 25
recommendations for action.
The group was made up of representatives from NGOs (patient organisations
with an interest in the subject), the pharmaceutical and biotech
industry involved in applications of genetic testing, scientists
and representatives with different academic backgrounds specialising
in genetic testing (law, philosophy, ethics, and medicine).
Throughout their work, they examined evidence from European and
international experts. International and European Organisations
(OECD, UNESCO, WHO, Council of Europe, EMEA) were able to follow
the hearings.
Who attended?
The conference was attended by the European Union’s Research
Commissioner, Philippe Busquin, Mrs. Eryl McNally, Member of the
European Parliament, the head of the European Commission’s
Directorate-General for Research, Achilleas Mitsos, and about
300 other participants.
Attendees came from various countries, in Europe and beyond, and
a range of organisations including those interested or involved
in genetic testing, the medical and scientific community, NGOs
(such as patients' organisations and organisations for disabled
people), health insurance providers, industry, experts in law
and ethics, public administrations, and international organisations.
The conference
At the conference, discussion of the 25 recommendations took place
over 11 sessions. The scene was set by two moving accounts from
people with personal experience in genetic testing.
In each of the 11 sessions, a representative of the group introduced
the topic, internationally recognised experts commented and ample
time was given for public debate. See conference report.
An ongoing debate on the topics of the conference is taking place
in the Forum section.
Contacts:
Content
Barbara Rhode
European Commission
Directorate-General Research
Directorate Science and Society
Head of Unit, "Ethics in Science and Research"
Email
Maurizio Salvi
European Commission
Directorate-General Research
Directorate Science and Society
Project Officer, "Ethics in Science and Research"
Unit
Email
Administration
Thierry Bourgeois
European Commission
Directorate-General Research
Directorate Science and Society
Email
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