Personalized medicine and genetic data protection: bioethical and legal issues

The extrordinary progresses achieved over the past decades in the field of human genetics and genomics have undoubtedly identified novel frontiers both in medical research and in clinical practice. Indeed, this innovation has significantly contributed to medical treatment of several human disorders and paved the way to personalized medicine approaches. At the same time, progresses in human genetics and genomics also raised delicate issues related to the collection and treatment of genetic data and to their use, particularly when one comes to their adoption in medicine and in the insurance field. Germany has already demonstrated considerable interest in this area by early approaching the field through a regulatory act, the Gendiagnostikgesetz. The discipline contained in the Gendiagnostikgesetz is strongly oriented toward the respect of the basic rights of the human being and of his dignity. Since discussion about this legislation has more recently started in Italy as well, it seemed appropriate to have a closer look at the existing German statute from a multidisciplinary perspective and draw conclusions from the experiences made and from the criticisms this legislation had to face. This volume assembles the contributions offered by Italian and German senior and junior scholars to an International Workshop, jointly organized in Naples by the Università di Napoli “Federico II” and the Freie Universität Berlin and held in May 2014.