Abstract

List of abbreviations 1. Introduction 1.1. From clinical to clinico-genomic research: New ethical and legal challenges 1.2. The ACGT project: Developing an ICT infrastructure 1.3. Aim and structure of the book 2. Ethical requirements 2.1. Introduction 2.2. Informed consent 2.3. The right to know, the duty to inform, and the quality of feedback 2.4. Summary of consolidated ethical requirements 2.5. Outlook: Ethical challenges in the european context 3. Legal requirements 3.1. Introduction 3.2. Theoretical analysis 3.3 Data protection within a trans-european research project - using the example of ACGT 3.4. Data protection framework within genetic research networks 4. Legal conclusion 5. References 6. Appendix 1- legal terminology 7. Appendix 2 - relevant regulation

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