Time to Decide: Learning from international approaches to newborn screening decision-making
We’re pleased to share Genetic Alliance UK’s new policy report, Time to Decide: Learning from international approaches to newborn screening decision-making.
Expanding population screening for genetic and rare conditions is a key part of our five-year strategy. While many countries now screen for over 20 conditions, only nine conditions are included in the UK’s NHS Newborn Blood Spot Screening Programme. There is growing consensus from across the rare community and Genetic Alliance UK’s broader network of stakeholders that this needs to change.
The report explores how the UK National Screening Committee (UK NSC) can accelerate its approach to decision-making for expanding newborn screening, drawing on research findings from 14 countries to identify practical, evidence-informed steps for improving the way decisions are made in the UK. It also considers the role of genomic newborn screening.
The report calls on governments and health system leaders to:
- adopt a pragmatic approach to evaluating evidence for genetic and rare conditions
- strengthen the involvement of patient organisations in decision-making
- ensure greater transparency in decision-making
- introduce more agile review processes to prevent unnecessary delays and promote readiness for new screening technologies
- commit to a long-term plan for broader health systems innovation, including readiness for new therapies.
We hope the report is a useful contribution to current discussions. We will be building on the report’s findings and messaging through a public affairs campaign to align with events related to newborn screening across the year. For any questions, please feel welcome to email [email protected]