Following the successful Westminster Hall debate in July 2019, Haemochromatosis UK has been pressing for a review of screening for the condition. This month, UK National Screening Committee has commenced a consultation on screening for genetic haemochromatosis in adults. This is the first such review in 5 years.

The UK NSC advises ministers and the NHS in the 4 UK countries about all aspects of population screening and supports implementation of screening programmes. Conditions are reviewed against evidence review criteria according to the UK NSC’s evidence review process.

Presently, the UK NSC does not recommend screening because - in their view :

• although a faulty HFE gene is known to cause iron to build up, this does not happen to every person with a faulty gene
• screening would identify people who may never experience symptoms
• there was no evidence to suggest that a screening programme would be effective

The committee have published a 211 page consultation document, with details of their approach and current position, here. 

Haemochromatosis UK and the Genetic Alliance are preparing submissions to the committee. Members are encouraged to email [email protected]  to share their views before 11th December, or to make a response to the committee directly.