Workpackage activities

Ethical Activities

• Organisation in collaboration with viWTA: Pre-framing workshop in Brussels, March 2 2005 "Stakeholders and ethical aspects in the genetic testing process"
• Organisation in collaboration with viWTA: Experts workshop in Sevilla, May 26-27th 2005: “Ethical aspects and governance of genetic testing services. What can we learn from the Technology Assessment approach and other recent studies in the field?
• Workshop on genetic testing in minors, 24-25 November 2005, Leuven
• Regular unit meetings & preparation of publications

Legal Activities

• Creation of a network of local experts within the 27 EU Member States (within both Ministries of Health as well as universities)
• Development of a questionnaire on the status of the Convention within the EU Member States and the status of national legislation on patient rights/users of genetic services (sent out to the 27 EU Member States in July 2005)
• Evaluation of the responses to the questionnaire which we have received during October-December 2005
• Elaboration of literature research and the (further) investigation of existing laws and jurisprudence in all 27 EU Member States related to patient rights and genetic services (ongoing process)
• Preparation of a detailed schematic overview of relevant national laws within the Member States on patients’ rights in general and genetic services in particular
• Preparation of detailed country reports of the 13 EU Member States who have signed and ratified the Convention (Bulgaria, Czech Republic, Cyprus, Denmark, Estonia, Greece, Hungary, Lithuania, Portugal, Romania, Slovakia, Slovenia, Spain) which will serve as a basis for a publication on these Member States
• Preparation of one booklet in the European Ethical-Legal Papers on patient rights in each country beginning with the EU Member States which have signed and ratified the Convention. (http://www.eurogentest.org/web/info/public/unit4/ethical_legal_papers.xhtml)
• Publication of an article on the 13 EU Member States which have ratified the Convention (Bulgaria, Czech Republic, Cyprus, Denmark, Estonia, Greece, Hungary, Lithuania, Portugal, Romania, Slovakia, Slovenia, Spain)
• Preparation of detailed country reports of the 8 EU Member States who have signed, but not yet ratified the Convention. (Finland, France, Italy, Latvia, Luxembourg, the Netherlands, Poland, Sweden).
• Publication of an article on the countries which have signed, but not yet ratified the Convention and an analysis of the reason why they did not ratify. (Finland, France, Italy, Latvia, Luxembourg, the Netherlands, Poland and Sweden).
• Preparation of detailed country reports of the 6 EU Member States which have not signed, nor ratified the Convention. (Austria, Belgium, Malta, Germany, Ireland, the United Kingdom)
• Regular work package meetings

Last changed: 2010-03-23