Genomics: Babies

(asked on 27th November 2023) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if she will make an assessment of the system readiness to introduce whole genome sequencing for newborns as part of the NHS.


Answered by
Andrew Stephenson Portrait
Andrew Stephenson
Minister of State (Department of Health and Social Care)
This question was answered on 5th December 2023

The Generation Study is a research study that will evaluate the utility and feasibility of screening newborns for a larger number of childhood-onset rare genetic conditions in the National Health Service, using whole genome sequencing. Genomics England are working closely with the UK National Screening Committee (UK NSC) to ensure the research generates the right evidence to inform any potential screening recommendations by the UK NSC and commissioning decisions by the NHS. If the evidence from the study indicates that the use of whole genome sequencing in newborn screening is effective, meets the criteria set by the UK NSC and a positive recommendation is made by the UK NSC, health ministers in the United Kingdom will then decide if this recommendation should be accepted. In the meantime, the UK NSC continues to assess proposals for additional conditions for newborn screening as they are received.

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