Prädikative und präsymptomatische Diagnostik spätmanifestierender Erkrankungen: Empfehlungen zur Testung einwilligungsfähiger Minderjähriger

During recent years, prediction has reached ever wider areas of medicine. This development includes the prenatal, predictive and pre-symptomatic diagnosing of diseases which manifest themselves later in life. Since a cure for a number of the diseases in question is currently not available and cannot be expected in the near future, the problem arises of how to deal with the expected findings of such diagnoses appropriately. Both in clinical application and in research, the question occurs of how to adequately address the expectations of patients and their families with regard to prognostics. In particular, predictive and pre-symptomatic diagnostics in children and adolescents poses challenges because children’s ability to consent to medical tests is even more difficult to assess than adults’. This volume offers an analysis and recommendations regarding predictive diagnostics for late onset diseases in children. Its recommendations are the result of a project funded by the German Federal Ministry of Education and Research. In addition to content analyses of existing research literature, they are based on interviews with individuals who sought or wanted genetic counselling and on interviews with physicians who are experts in human genetics.