An assessment of written patient information provided at the genetic clinic and relating to genetic testing in seven European countries

The aim of this study was to assess the quality of written information for patients and families about genetic testing, from a range of European countries. Written information relating to genetic testing for five conditions was gathered from genetic departments across seven European countries. Written information for each condition from each country was randomly chosen for assessment. Fourteen key issues had been identified by a number of pre-existing tools (in particular the DISCERN-Genetics tool) as being important for inclusion when developing or assessing material relating to genetic testing. Fifty pieces in total were assessed for the inclusion or omission of key issues. Although the majority of information discussed issues relating to the condition including background and effect (n = 48, 96%), treatment and management (n = 37, 74%) and heredity and risk (n = 49, 98%), only half the information discussed where to obtain additional information and support (n = 25, 50%). Less than half the information discussed what happens after the test (n = 15, 30%), patient rights (n = 12, 24%) and shared decision making (n = 12, 24). Benefits were more likely to be included (n = 41, 82%) than any risks involved (n = 24, 48%). The issue discussed least frequently was the possible psychological and social effects of genetic testing (n = 9, 18%). Pre-written leaflets tended to provide a more comprehensive discussion of the issues surrounding genetic testing than personal letters did and should therefore routinely be available to patients alongside personal letters. Written information should include risks and limitations of testing as well as discussion of the psychological and social aspects of genetic testing.