Objectives
PRIVILEGED (Privacy in Law, Ethics and Genetic Data) will make recommendations for research practice and public policy, including regulatory options at the national and European level, to promote the optimal relation between research using genetic data and bio-banks and ethical interests in privacy. The ethical interests in privacy are being explicated through survey, description and comparison of the alternative conceptions of privacy currently operating throughout the Europe and Israel, Japan and Taiwan, paying particular attention to the relative interests accorded an individual as a member of a group.
Our strategic objectives are:
- To identify, analyse and compare different ethical, cultural, and social concepts of privacy as engaged by research using genetic data and bio-banks; describing areas of common understanding and recognising significant points of difference within both the conceptions themselves and their relationship with research.
- To describe and compare Member State regulation of research using genetic data and bio-banks, with particular reference to data protection, and to evaluate the relationship between regulation (including associated strategies of compliance) and the ethical needs of privacy. To establish in what ways, and to what extent, data protection regulations may be either consistent or inconsistent with, or insufficient for, the protection of identified ethical interests in privacy.
- To make recommendations for research practice and policy at national and European level for the promotion of a harmonious relationship between research using genetic data and bio-banks and data protection and privacy interests as articulated at both national and European level.
