FraXI’s Kirsten Johnson was joined by many other experts, organisations and advocates at the Screen4Care Newborn Screening (NBS) Forum in Warsaw last week. Among the topics discussed was the present and future of genomic newborn screening (gNBS) in Europe. 

The discussions brought to light many important issues to think about regarding gNBS technology such as the ethics and trust that go into making decisions about NBS, good governance, feasibility, patient empowerment and what can be done to advance policy and advocacy for the practice in Europe. 

The group also stressed the importance of expanding traditional newborn bloodspot screening so that there is equity across Europe. The group agreed that Actionable conditions, where early intervention in treating symptoms can improve quality of life and outcomes, should be generally considered for newborn screening, and as evidenced in the Rare Barometer Survey on newborn screening. Further, there was a presentation from Genetics Alliance UK on their Time to Decide report, with discussion around international coordination and pragmatic approaches being used to add more conditions to newborn screening panels.