Ethical, social and legal aspects of human genetic testing

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 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.

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.

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.