A EURORDIS position paper: Key Principles for Newborn Screening

For the first time, EURORDIS, alongside its Council of National Alliances, Council of European Federations and its members, have set out 11 Key Principles to support a harmonised European approach to Newborn Screening. The vast inequalities across Europe, coupled with technological and scientific advances highlight the urgent need to move forward from the status quo.

The principles make clear that Newborn Screening should be organised as a system with clearly defined roles and responsibilities, and governance and accountability structures that are transparent and robust. Appropriate psychological, social and economic support standards for families whose newborn is screened should also be in place. Healthcare professionals should receive thorough training, and there is a need for broader public awareness. As all future citizens should be screened, everybody needs to understand the why and how of screening. European wide standards should also be set to ensure every parent in Europe can expect the same timing, collection methods, follow-up and information when their baby is screened.

EURORDIS is calling for the creation of a European Union level expert working group to coordinate this action, and for the European Institutions to endorse such initiatives. In addition, they call on the Steering Group on Health Promotion and Prevention (SGPP), the committee that advises the European Commission on public health actions, to initiate a best practice collaboration with some Member States to pilot Newborn Screening programmes based on these principles.

Click HERE to see the full position paper.