[Internet-based Information on Genetic Testing in Children with Intellectual Disability and Epilepsies: a Systematic...

Genetic testing is of increasing diagnostic relevance in the evaluation of children with developmental disorders, intellectual disability and epilepsies. The complexity of genetic analyses constitutes a challenge with respect to obtaining informed consent. Internet-based information might facilitate this process.

We systematically screened and evaluated the available internet-based information of the German pediatric societies and human genetic institutes using standardized methods (e. g. DISCERN Genetics, LIDA, LIX).

We found information on 111 homepages. Appearance and navigation could be classified as satisfactory. However, the content was often incomplete and difficult to understand. Forms for informed consent sometimes lacked adequate options for individual decisions. Complexity of informational texts was rated "high" to "very high". Information using plain language was not at all available. There was a limited number of homepages containing information in a language other than German.

Internet-based information might be helpful for achieving adequately informed consent in complex medical situations. In terms of genetic testing, this information might facilitate the preparation for the pre-diagnostic discussion. Information should be easily accessible including options like plain language, audio versions and foreign language material.