EU ethical, social and legal aspects of human genetic testing

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Apr 14 2004

On 6 and 7 May 2004, the European Commission is inviting all interested parties to attend a European citizens’ and stakeholders’ conference to discuss the ethical, social and legal aspects of human genetic testing in research and healthcare applications.

The conference is organised to prepare the next steps for decision makers. It will be based on the report and the 25 recommendations made by a high level European Commission Expert Group. The Group, chaired by Eryl McNally, Member of the European Parliament, has worked on the report and the recommendations for over a year, the drafting of which was coordinated by the rapporteur Prof. Anne Cambon-Thomsen. The results of the stakeholder and citizen conference should further complement the report.

The Expert Group is 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.) The Group has discussed a number of the issues related to human medical genetic testing, after which they have agreed on 25 recommendations for action.

Throughout their work they have taken further evidence from European and international experts. International and European Organisations (OECD, UNESCO, WHO, Council of Europe, EMEA) have been able to follow the hearings.

The Expert Group aims to present their 25 recommendations to decision-makers, other actors in the field and to the public at large. European Research Commissioner Philippe Busquin, Mrs. Eryl McNally, MEP, and most Group members will participate in this important debate.

The 25 recommendations will be translated in 20 languages; the thought-provoking report drafted by the Group will be made available in three languages.

Who should attend?

Participants from organisations interested by or involved in genetic testing, such as the medical and scientific community, NGOs – including patients’ organisations and organisations for disabled people – health insurance providers, industry, experts in law and ethics, public administrations, international organisations, the general public and the media, are all invited to attend the conference.