Community Research and Development Information Service - CORDIS

FP5

Genetic testing. Patients' rights, insurance and employment: a survey of regulations in the European Union

Project ID: QLK3-CT-1999-00241
Funded under: FP5-LIFE QUALITY

Abstract

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.

Additional information

Authors: NYS H, Centre for Biomedical Ethics and Law, Faculty of Medicine, Katholieke Universiteit Leuven (BE);DREEZEN I, Centre for Biomedical Ethics and Law, Faculty of Medicine, Katholieke Universiteit Leuven (BE);VINCK I, Centre for Biomedical Ethics and Law, Faculty of Medicine, Katholieke Universiteit Leuven (BE);DIERICKX K, Centre for Biomedical Ethics and Law, Faculty of Medicine, Katholieke Universiteit Leuven (BE);DEQUEKER E, Centre for Human Genetics, Faculty of Medicine, Katholieke Universiteit Leuven (BE);CASSIMAN J-J, Centre for Human Genetics, Faculty of Medicine, Katholieke Universiteit Leuven (BE)
Bibliographic Reference: EUR 20446 EN (2002), 154pp. Free of charge
Availability: EUR-OP reference: KI-NA-20446-EN-C Available from: Documentation Service of DG Research Fax: +32 2 295 8220 E-mail: research@ec.europa.eu
ISBN: ISBN: 92-894-4217-4
Record Number: 200315976 / Last updated on: 2003-02-26
Category: PUBLICATION
Original language: en
Available languages: en
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