Genomics: Babies
The question
To ask the Secretary of State for Health and Social Care, with reference to page 12 of the policy paper entitled 10 Year Health Plan for England: fit for the future, published on 3 July 2025, whether parents will be able to opt-out of universal newborn genomic testing.
Answered by Dr Zubir Ahmed
The 10-Year Health Plan set out an ambition to offer newborn genomic testing as part of routine care within the next decade. Delivering against this ambition will be subject to evidence gathered through the Generation Study. This research programme is evaluating the effectiveness of using whole genome sequencing to test 100,000 newborns for more than 200 rare genetic conditions.
Participation in the Generation Study is voluntary, with parental consent required to store genomic and health data securely. Consent is an ongoing process, and parents can withdraw their child at any time before age 16, when the child will be asked to re-consent. If genomic testing becomes part of routine screening, parental consent will still be required, as with the current NHS screening programmes for newborn babies.
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