Ethical and legal issues of peronalized medicine

Developments in NGS and Personalised Medicine raise great expectations for the improvement of health care. At the same
time, these highly dynamical developments raise a whole range of normative, ethical and legal, issues. While many of these
issues have been the object of debate and sets of recommendations, there is an urgent need for a systematic ethical and legal
analysis, taking account of a) the blurring of both clinical care and research, and diagnostic testing and screening, b) ongoing
studies (in order to avoid duplications), and c) the need for normative guidance of the various stakeholders involved, especially
researchers and clinicians, patients, and policymakers. The proposed research project of the Research Consortium Ethics &
Law of Personalised Medicine entails five parallel, clearly intertwined, research projects about a well-selected subset of the
most pertinent normative issues regarding NGS and Personalised Medicine, aimed at the development of a coherent, robust,
normative framework, with concrete guidelines for responsible innovation.