Presentation May 20th 2016

Expansion of the Dutch neonatal Screening Programme. Policy and Practice

September 11, 2014, the 40th anniversary of the Dutch neonatal screening programme was celebrated. While the programme stably screened for one, and then three diseases (PKU, CAH, CH) for many years, in 2005 an advisory committee of the Health Council (the major advisory body on health issues towards the Dutch ministry of Health, Welfare and Sports), recommended to expand the programme with 14 diseases at once. The minister adopted this advice and in two years’ time, the entire Dutch neonatal screening organization prepared to be ready for this major expansion, starting January 1, 2007. In 2013, the minister of Health ordered a follow-up advice of the Dutch health council, focusing on four questions:
  • Should the programme be expanded yet again, and with what diseases?
  • How should the programme deal with unintended findings?
  • How should the programme deal with detected carriers?
  • Should the timing of the blood sampling be changed?
In this presentation, the carefully crafted approach of shaping the innovation of the Dutch neonatal screening programme is covered. Then, the major points of the most recent advice of the Health council, issued April 8, 2015 are discussed, to give an overview of the developments in the next coming years. To uncover a glimpse of what awaits us, the minister of Health, in a very speedy response, sanctioned an expansion of the programme with yet another 14 diseases, possibly making it one of the most expanded in Europe.

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