John Brady (Wicklow, Sinn Fein)
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27. To ask the Minister for Health if he will extend the newborn screening test pilot scheme for detecting metachromatic leukodystrophy and severe combined immunodeficiency; and if he will make a statement on the matter. [20904/19]

Simon Harris (Wicklow, Fine Gael)
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All newborn babies (between 3 and 5 days old) are offered newborn bloodspot screening (generally known as the ‘heel prick’) through their parents/guardians for eight very rare conditions that are treatable if detected early in life.

These include:

- cystic fibrosis

- congenital hypothyroidism

- phenylketonuria

- classical galactosaemia

- MCADD (medium-chain acyl-CoA dehydrogenase deficiency)

-homocystinuria

-maple syrup urine disease

-glutaric aciduria type 1

The most recent expansion of the programme occurred on 3rd December 2018 when screening for Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD) and Glutaric Aciduria Type 1 (GA1) commenced.

Metachromatic leukodystrophy and severe combined immunodeficiency are not currently screened for as part of this screening programme in Ireland.

However and as per recommendation 5, contained within the Scally Review (2018), a National Screening Committee will be established and become operational before the end of 2019. This is to strengthen the governance, transparency and oversight of any proposed new programmes or changes to existing programmes. Similar to the UK National Screening Committee, the Committee’s role will be to undertake an independent assessment of the evidence for screening for a particular condition against internationally accepted criteria and make recommendations accordingly.

Any future potential changes to the National Newborn Bloodspot Screening Programme will be incorporated as part of the Committee's work programme.