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EuroGentest publishes genetic testing patient information leaflets

Having conducted the first major survey of the quality of current written patient information across the EU, EuroGentest has published a series of 11 patient information leaflets on the main topics in genetic disease and genetic testing.

Endorsed by Patient Information Groups across Europe, the leaflets are already in English, and are currently being translated into Polish, Romanian and Italian, a process which will eventually extend to all the main EU languages. The leaflets will be freely available throughout genetic clinics across the EU as well as through patient groups and other relevant bodies. The leaflets follow the publciation last month of the first of another series of EuroGentest intiated guides to patient rights.

According to project researcher Celine Lewis, there were major differences in the prevailing situations both between and within the 7 countries initially surveyed: “In some cases a combination of patient letters and pre-written leaflets were provided to patients and families during the genetic consultation, in others one or the other. However, no country had a comprehensive or standardised approach. Furthermore, we found that there were great differences in the quality of written information provided in genetic clinics across Europe. Whilst the majority of the material we asessed provided information about the condition being tested for, less than a quarter provided information on the psychological and social consequences of genetic testing, and only half provided details concerning where to access additional information and support.

When we approached Patient Interest Groups for comment, all voiced a common concern that whilst the benefits of genetic tests were usually covered, the risks were either not adequately explained or not covered at all. This was also one of the major findings during the assessment. Another major finding was that pre-written materials were far more comprehensive in discussing the key issues than personal letters were, and this was the impetus for developing pre-written information leaflets for use across the EU. Using the resources of the EuroGentest network and consulting with all major stakeholders, we have developed a series of 11 leaflets for patients and families about Genetic Inheritance Patterns, Chromosome Problems, Genetic Testing and Information About Your Genetic Appointment.

There is also a Frequently Asked Questions leaflet of use to patients and families who will be speaking to a specialist about genetic testing, and a detailed Genetic Glossary. This information is designed to be used alongside the discussions patients and families have with a genetic specialist.”

The leaflets can be downloaded from the EuroGentest website –

Richard Hayhurst | alfa
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