The aim of the project is to make recommendations for research practice and public policy, including regulatory options at the national and European level and to promote the optimal relationship between research using genetic data and bio-banks and ethical interests in privacy. Ethical interests in privacy are being explicated through surveys, descriptions and comparisons of the alternative conceptions of privacy currently operating throughout Europe, Israel, Japan and Taiwan, paying particular attention to the relative interests accorded an individual as a member of a group.
The strategic objectives of the project are: (1) to identify, analyze 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 recognizing significant points of difference within both the conceptions themselves and their relationship with research; (2) 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; (3) 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; and (4) 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 biobanks and data protection and privacy interests as articulated at both the national and European levels
The Project started in 2007 and lasts for 36 months. It is one of the largest research networks in which CELAB participates, including 49 Research Partners in various European countries and in Israel, Taiwan, and Japan.