The UK NSC recommendation on Galactosaemia screening in newborns (currently under review)


This recommendation is currently being reviewed as part of the UK NSC's regular review cycle of all policies.

The review process began in Nov 2019 and is estimated to be completed by Dec 2020.

Recommendation Systematic population screening programme not recommended
Key downloads

Find general information about population health screening.

Why is screening not recommended by UK NSC?

Screening for galactosaemia in newborns is not recommended. This is because:
  • screening and treatment do not prevent long term problems caused by the disease
  • screening would identify many babies who may never become ill
  • some babies would become ill before test results are available
  • current screening tests already identify some babies with the condition

More about Galactosaemia

Galactosaemia is a rare genetic condition. Babies born with it are unable to convert the sugar present in milk into glucose, the sugar used by the body. Symptoms include jaundice, failure to thrive, feeding difficulties and kidney disease.

» Read more about galactosaemia on the Contact a Family website


ArchAngel MLD Trust
British Association of Perinatal Medicine
British Inherited Metabolic Disease Group
Clinical Genetics Society
Faculty of Public Health
Galactosaemia Support Group
Genetic Alliance UK
Institute of Child Health
Metabolic Support UK
Royal College of General Practitioners
Royal College of Midwives
Royal College of Paediatrics and Child Health
Royal College of Physicians
Royal College of Physicians and Surgeons of Glasgow
Royal College of Physicians of Edinburgh
UK Newborn Screening Laboratories Network

The stakeholder groups will be involved when the recommendation is next reviewed. If you think your organisation should be added, please contact us. More information for stakeholders can be found in appendix C of the UK NSC evidence review process.

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