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Written question asked by Blake Stephenson (Conservative) on Friday, 5 September 2025, in the House of Commons. It was due for an answer on Tuesday, 9 September 2025. It was answered by Zubir Ahmed (Labour) on Thursday, 9 October 2025 on behalf of the Department of Health and Social Care.

Genomics: Babies

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, how long individualised genomic data for newborns will be retained.

Answer

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.

With parental consent, data is stored securely in the existing National Genomic Research Library which, with patient consent, already stores genomic data from the NHS Genomic Medicine Service to support ethical research. The study is exploring the risks and benefits of storing an individual's genome over their lifetime. Therefore, genomic data will be stored throughout the child’s life, unless consent is withdrawn. Consent is an ongoing process, and parents can withdraw their child at any time before the age of 16 years old, when the child will be asked to re-consent. The study will deliver an evaluation report which will inform future policy decisions around the storage of personal, including genomic, data.

Secondary information

Type
Written question
Reference
75403
Session
2024-26
Related items
Deposited Paper DEP2025-0460
Monday, 7 July 2025
Deposited papers
House of Lords
Subjects
Babies Genomics
Link
View this Written question on www.parliament.uk