Community Research and Development Information Service - CORDIS


The aim of the European Thematic Network on Cystic Fibrosis is to create a unique European interaction platform for scientists involved in fundamental CF research, for genetic diagnostic laboratories, for CF associations of families, patients and clinicians, ethical, legal and IPR experts and representatives of industry. The ethical-legal subgroup of the network is drawing up guidelines on the application of new diagnostics and therapeutics, which needs to take account of the evolving legal framework in EU Member States. A comparative analysis of the basic principles of patients' rights - informed consent, information about the health status, protection of privacy of medical data - in the different Member States of the EU has been carried out. The regulations for genetic testing applied in the different EU countries have been reviewed. Rules, visions and initiatives in these States with regard to the specific contexts of insurances and employment for genetics and patients' rights have been focused on. The consequences and implications of the regulatory initiatives regarding patients' rights in the field of genetic testing are discussed.

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