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Written question asked by Richard Holden (Conservative) on Monday, 3 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 Wednesday, 26 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, whether any NHS trusts (a) collect and (b) are required to collect data on (i) child and infant mortality, (ii) congenital anomalies and (iii) other health outcomes attributable to parental consanguinity.

Answer

The responsibility to collect and report child deaths is held by the commissioning authority and local authorities’ Child Death Overview Panels (CDOPs), not National Health Service trusts. The Child Death Review statutory guidance requires NHS trusts to provide CDOPs with information to review a child’s death. This is done on an individual basis from the child's medical records and not from centrally held data within the NHS trust.

CDOPs and the National Child Mortality Database (NCMD) cannot comment on “other health outcomes attributable to parental consanguinity” because the CDOP process only applies to live born children who die before their 18th birthday.

The NCMD are preparing a thematic review of deaths to be published in 2026, which will report on the percentage of child death reviews that are attributed to chromosomal, genetic, and congenital anomalies, identifying consanguinity as a contributing factor.

Secondary information

Type
Written question
Reference
87434
Session
2024-26
Subjects
Congenital abnormalities Hereditary diseases Marriage Parents Relatives Infant mortality
Link
View this Written question on www.parliament.uk