Prädiktive genetische Beratung in Österreich, Deutschland und Japan: Ergebnisse, Möglichkeiten und Grenzen eines multi-methodischen Vergleichs

Abstract: Genetic testing poses a complex regulatory problem. Consequently, as our cases show, the political systems in Austria, Germany and Japan had difficulties regulating the practice of genetic diagnostics. The solutions found are all characterised by a tension between profes-sional self-regulation and state intervention. Although the form of regulation differs between Austria (law), Japan (self-regulation) and Germany (self-regualtion, draft law), there are simi-larities, too. In all three countries, the authority for legal regulation lies with the central state. All three countries generally feature a strong role of the civil service in the process of policy - (and law-) making. In contrast to the important role played by the civil service in all three countries, the importance of the respective parliaments regarding the regulation of clinical practice of human genetics differed widely in the three case studies. All three cases provide examples for the lack of comprehensive public debate. Until today, discussions about human genetics and problems related to its application remain largely within the semi-public of de-bates among experts. With regard to the content of the respective regulations, similarities of discourse didtranslate into similarities on the level of regulation. This holds true for most of the problems addressed in the regulatory documents as well as for concepts used as a means to of solvinge them, e.g. the duty of medical professionals to provide "non-directive" genetic counselling, or regulations as to who might conduct genetic tests under which circumstances. Predictive genetic counselling is essentially concerned with the effort undertaken by counsel-lors and counselled to clarify, whether a person is affected by a hereditary disease or not. The term Hadolt/Lengauer (2009) used for this is "affectedness", which includes the eventual genetic disposition for a disease, its consequences for the client and his/her relatives, the prognosis aswell as possible prevention and therapy for the respective disease. All these basic orientations are present in genetic counselling in Austria, Germany and Japan. However, differences between the three countries exist with regards to the actual practice of genetic counselling. Whereas in general counsellors tend to take a more neutral stance in cases where no or only very limited therapeutic possibilities exist, yet they are inclined to be more directive in cases in which there is more medical b