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African-Caribbean families not given sickle cell results for 12 years due to error

The Guardian

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January 01, 2025

An NHS error led to hundreds of families with African-Caribbean heritage being unaware of whether their babies carried certain genetic blood disorders.

- Tobi Thomas

More than 800 families in Derbyshire were not sent the results of a heel prick test given to babies after birth, meaning they did not know whether their child was a carrier of a trait for sickle cell disease or for an unusual haemoglobin gene.

The Guardian understands the failure was not noticed for 12 years, until March last year, when a parent contacted the NHS to ask why they had not received their child's results. That led to the discovery of a systemic failure affecting hundreds of people, with the NHS beginning to contact affected families four months later.

The NHS said the failure was owing to changes in 2012 regarding how the results of the genetic testing were communicated to parents.

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