Projects - EuroGenGuide

The EuroGenGuide project is a three year initiative funded by the European Commission for Life Sciences and Biotechnology. The project aims 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 be considering allowing samples of their DNA to be used for research into new therapies for treating or curing inherited disorders.

EuroGenGuide is comprised of two halves - one containing information for patients and the general public, and the other containing educational materials for health professionals. The aim is that these two complementary sets of information will "dovetail" into a set of guidelines and advice that can be used across the continent and which will 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. Once finished, EuroGenGuide will serve 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, the EuroGenGuide will provide 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 is being run in collaboration with twelve partner organisations from around Europe, all of whom bring 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.

Currently reaching the end of its second year, EuroGenGuide is progressing well and looking towards the final twelve months of the project, at the end of which the full and finished EuroGenGuide will be launched across the continent. The first version of the guide was produced in July 2008, the point at which the website went online, and this version was officially launched two months later, in September 2008.

The website contains key information for patients and health professionals about genetic testing and research, and is also regularly updated with recent news and developments in the field from around Europe. The website content is supported by a forum where members of the public, patients and health professionals can share their knowledge and experiences, establish links with patient support groups elsewhere in Europe and find links to national and regional genetics-related bodies in their area of the continent. Please feel free to have a look at the EuroGenGuide website at: www.eurogenguide.eu or www.eurogenguide.org.uk.

The project will be complete at the end of 2009, by which time I hope it will be a useful resource for anybody in Europe with an interest in the field. 

If you would like any further information about the EuroGenGuide, or if you have any comments, suggestions or feedback on the material, please feel free to contact me, Alex McKeown at the GIG office by email: enquiries@eurogenguide.eu, or by telephone on 0207 704 3141.