Question to the Department of Health and Social Care:

To ask His Majesty's Government what steps they are taking to position the United Kingdom as a global leader in the use of newborn genetic screening data to support earlier detection and prevention of conditions, including diabetes, neurological disorders and rare genetic diseases.

As set out in the 10-Year Health Plan, the Government has an ambition to offer newborn genomic testing as part of routine National Health Service care within the next decade. The Generation Study is developing evidence to inform this ambition, by evaluating the effectiveness of using whole genome sequencing to test 100,000 newborns for over 200 genetic conditions. Positive results are only returned where there is robust evidence that a treatable condition is likely to develop within the first five years of life. There are no plans to screen for conditions that appear later in life or remain asymptomatic. By summer 2027, 100,000 newborns will have had their whole genomes sequenced. The evaluation part of the study will then be completed and presented to the UK National Screening Committee (UK NSC). Subject to the study’s evaluation, the UK NSC’s advice, and the appropriate funding, genomic testing could be available for all newborns in the United Kingdom by 2035.