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Written question asked by Richard Holden (Conservative) on Tuesday, 4 November 2025, in the House of Commons. It was due for an answer on Tuesday, 11 November 2025 (named day). A holding answer was provided on Wednesday, 12 November 2025. A substantive answer was provided by Zubir Ahmed (Labour) on Tuesday, 25 November 2025 on behalf of the Department of Health and Social Care.

Hereditary Diseases

Question

To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) improve data collection and (b) integrate indicators related to (i) parental consanguinity and (ii) genetic risk into future (A) public health strategy and (B) NHS resource allocation frameworks.

Answer

The National Disease Registration Service (NDRS) in NHS England is directed by my Rt Hon. Friend, the Secretary of State for Health and Social Care to collect data and report on the prevalence of cancer, and congenital and rare conditions in England, and this includes genomic data where available. NDRS publishes official national statistics on the birth prevalence of congenital conditions in England, presented by geographical region and stratified by the presence or absence of a known genomic cause. Parental consanguinity is a data item within the NDRS congenital conditions dataset, but reporting remains incomplete across many data providers. As a result, the data is insufficient to support routine reporting on the birth prevalence of congenital conditions in consanguineous families. NDRS is working with hospital trusts to continually improve the quality and completeness of data. Other relevant initiatives include the Born in Bradford study, which provides valuable insights into congenital conditions and associated risk factors, including consanguinity, in a defined population. Further information on the NDRS is available at the following link:

https://digital.nhs.uk/ndrs/

Secondary information

Type
Written question
Reference
87858
Session
2024-26
Grouped for answer
Yes
Subjects
Congenital abnormalities Health Hereditary diseases Marriage Parents Relatives Public health
Link
View this Written question on www.parliament.uk