Jean-Jacques Cassiman

EuroGentest standing up to scrutiny first year demonstrates good progress harmonizing community approaches

the enlarged community is seen as a main priority for the European Commission. However, many areas are deeply rooted in national politics. For example, cancer and cardiovascular care have usually long been considered one of the main responsibilities for the national health services. Thus, although there are encouraging signs that expertise in more traditional areas is being more widely shared, real progress is being made in the relatively new disciplines, such as allergology and genetics. This applies particularly to genetic testing for a variety of reasons. Firstly the scope of genetic testing has to transcend national boundaries. Rare mutations by their nature occur infrequently and in highly diverse locations, which means it is simply impractical and indeed impossible for every genetic testing laboratory to have the expertise to analyse and interpret all results. For this reason, sample referral across borders has long been common practice. This close working and knowledge sharing is reflected in the spirit of cooperation apparent in the European Society of Human Genetics. Another key issue is the specialized counselling needed both before and after testing. Again to develop the necessary expertise and training platforms is an immense task, difficult to achieve where there is intense competition for resources. Furthermore, even though genetic disorder patient support groups are among the most active and dedicated, their ability to contribute is limited due to the highly competitive patients’ advocacy groups. For these reasons there was a growing consensus amongst stakeholders that a pan-European initiative was needed. What was missing was a vehicle and a final impetus. The vehicle has turned out to be a Network of Excellence (NoE), which enables stakeholders to work together and provide both practical help and recommendations, which can be adapted easily by national bodies. There were then two main stimuli. The first was concern in Italy about the levels of counselling being given to patients, and the second was the eagerness of new member states to take a common approach to improving their genetic testing services. The actual project was initiated as a consequence of a study performed at the initiative of the Institute for Prospective Technology Studies (IPTS) in Seville. In response to a call to action by a former commissioner and member of the European Parliament, Philippe Busquin, who remains a staunch supporter, a consortium was assembled, led by Jean-Jacques Cassiman of the Leuven Catholic University in Belgium and successfully applied to the EU in 2004 for funding over 5 years to create a European Network of Excellence (NoE) in genetic testing. J Appl Genet 47(1), 2006, pp.