Commission group calls for common approach on genetic testing

In its recent meeting, the EC expert group on Rare Diseases discussed the current status of the implementation of Cross-Border Healthcare, the role of European Reference Networks and crucially, the issue of genetic testing across Member States. The group now to support the implementation of such policy instruments and facilitate the process of cross-border genetic testing (CBGT) of rare diseases.

• Access to genetic testing. Experts recommend to member states to include access issues in their national plans and strategies, ensure transparency over the availability of testing and increase efforts on CBGT. They further highlighted the possibility of developing shared resources to facilitate CBGT of rare diseases.
• Assessment of genetic testing. The Commission Group stresses the need to share national data on assessment of genetic testing in as much as clinically-guided genetic testing may avoid the need for further invasive procedures in the future
• Sharing expertise. European laboratories should increase their contributions to international databases and the European Reference Networks should encompass the organisation of collaboration between expert laboratories.
• Availability of information on genetic testing laboratories. For the Experts, it is also important to ensure transparency of information on genetic testing laboratories and more contributions to Orphanet from the same laboratories.

Healthcare remains an issue which falls firmly within the scope of EU competence and so the group restricts itself to transparency and information sharing. Nonetheless this remains an important step towards greater sharing of genetic information in the treatment of rare diseases.

More information about this meeting can be found here.