Projects - EuroGenGuide

The EuroGenGuide project was a three year initiative funded by the European Commission for Life Sciences and Biotechnology. The project aimed to provide high quality information about genetic testing and research to the European public, and in particular to those affected by genetic disorders who may consider allowing samples of their DNA to be used for research into new therapies for treating or curing inherited disorders.

EuroGenGuide comprised of two halves - one containing information for patients and the general public, and the other containing educational materials for health professionals. The aim was that these two complementary sets of information "dovetail" into a set of guidelines and advice that can be used across the continent and which would help to ensure that the European public is able to make informed and rational decisions in respect of treatment in this complex area of science and medicine. EuroGenGuide serves as a comprehensive resource for anybody within Europe for whom genetic research and medicine is relevant.

In the interests of helping to increase the scale of research for the development of treatments for genetic disorders, EuroGenGuide provided public information, and professional practice guidelines on the following areas:

• Informed consent
• DNA / Bio banking
• Access to the outcomes of genetic research and the development of treatments
• Gender perspectives in genetic testing and research
• Ethnic minority perspectives in genetic testing and research

The EuroGenGuide was run in collaboration with twelve partner organisations from around Europe, all of whom brought different expertise and areas of specialist knowledge to the project within the fields of genetics, genomics, patient support, professional education, research and public health communication.

The EuroGenGuide website contains key information for patients and health professionals about genetic testing and research.

The project completed at the end of 2009.