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.
- 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)
“ … Readers will enjoy a detailed analysis of informed consent from an ethical and legal perspective, and furthermore an excellent compendium of legal analysis concerning genetic data protection in Europe. ….”
Hans Christian Wilms, European Journal of International Law, Volume 22, 2011
“...this is a particularly timely and valuable contribution to the literature. ”
Roger Brownsword, Law, Innovation and Technology July 2011