Patient Led Education and Development for Genetic Testing in Research and Medicine (EuroGenGuide)

Basic data for this project

Description

Genetics and genomics have become central disciplines of biomedical research in the EU and worldwide. Recent advances and those anticipated over the coming years, mean that an increasing proportion of the EU-population will come into contact with genetics, as patients, as part of population screening programmes, or as participants in an increasing number of large research programmes. However, a coordinated European strategy to prepare the public for understanding and using these technologies has been lacking. Genetic testing in the EU, whilst based on high quality scientific know-how, suffers from a high level of poor/misleading information caused by a lack of educational material at the European level and the absence of a common European objective to provide quality information to all its consumers in the different member states. The proposed SSA includes leading European patient organisations and representatives of the genetics professional/scientific community. It aims at developing effective and easily available tools that will 1. help the European public to understand and make informed decision about participating in genetics/genomics research and genetic testing 2. educate health professionals/researchers to engage patients/clients in an appropriate informed process. This will be done by developing a consensus based "consumer" manual for patients and the public and related education materials for health professionals. This SSA is based upon the premise that the genetics professional community should collaborate strategically with lay/patient advocacy organisations to realise focused, culturally competent tools that will both empower patients and consumers to make informed decisions and help to improve professional practice. The European network of patient organisations and professional bodies represented in this SSA provide a unique platform and infrastructure for dissemination of the results.