Translating testing into practice and prevention
In line with the meteoric advances in genetics and genomics, the number of genetic tests for both rare and common disorders is rising. The implications for healthcare, in terms of cost and nature of provision, as well as prevention services, are enormous. The EU faces the challenge of developing adequate standards for genetic testing while taking into account cost and national, cultural and linguistic differences within Europe. With EU funding, the project Capability aimed to establish and sustain, not only a pan-European but global harmonisation process to develop genetic tests and their standards for application in medical practice and preventative healthcare. A key feature of this initiative was the successful networking between EU research and medical centres in Europe and developing countries. Project members successfully established a cross-discipline international network including representatives from Argentina, China, Egypt, Philippines, South Africa, Sweden, United Kingdom and the United States. Raw experience by Capability partners worldwide reinforced the importance of being sensitive to specific country needs and conditions. A prime example was the development of genetic services in primary and secondary healthcare in South Africa, which is severely affected by staff shortages (due to migration and brain drain) and the HIV/AIDS and TB epidemics. Just one of the success stories of the Capability capacity model is its integration into the health service plan in Argentina. A medical genetic care programme including new laboratory services will be established in four provinces in the northeast of the country. Looking ahead to handling rapid advances in the future, the project scientists made sure that there will be the capacity to develop, harmonise, validate and standardise genetic testing services through the 'Genetic services in emerging economies' (GenTEE) project. The GenTEE network – a successor of the Capability network – is supported by the European Commission's Research Centre Institute for Health and Consumer Protection. Although the project itself was completed in December 2009, the Capability model approach continues to gather momentum. A high level of dissemination and transparency are probably the main keys to its success. In line with this philosophy, the Capability website will be maintained until 2013 and can be viewed at http://www.capabilitynet.eu/.
