Ethical and Legal Requirements of Transnational Genetic Research

Abstract

To facilitate genetic research, the collection, integration and exploitation of data are a prerequisite. Genetic data, however, providing information not only about the person him/herself, but also about her/his family, parentage and ultimately ethnic descent, is considered to be the most valuable, and yet most vulnerable data which needs to be protected at all costs. On the other hand, clinical research makes it necessary to disclose and exchange genetic data. Content Introduction Ethical requirements (Informal consent; The right to know, the duty to inform, and the quality of feedback; Summary of consolidated ethical requirements; Outlook: Ethical challenges in the European countries) Legal requirements (Theoretical analysis, Data protection within a trans-European research project; Data protection framework within genetic research networks; Legal conclusions)