Issues in protecting privacy in medical research using genetic information and biobanking: The privileged project

Abstract

PRIVILEGED was an EC FP6 project exploring the protection of the interests of citizens in relation to medical research using genetic information and biobanks, particularly in relation to privacy and its protection through data protection. It did this through: (stage one) a literature review assessing the concepts of privacy used, and the interests expressed by citizens, in this area; (stage two) by compiling and studying the relevant European and national law already in place, especially assessing its congruence with the issues identified in stage one; and (stage three), considering areas of particular difficulty for the law and the nature of future regulation. This introduction first presen..