Genome Screening: Newborn Infants

Baroness Thornton Excerpts

Thursday 18th September 2025 Lords Chamber

[Lord Winston]

To ask His Majesty’s Government what plans they have to screen the genomes of newborn infants for different genetic conditions.

[Baroness Thornton (Lab)]

My Lords, I beg leave on behalf of my noble friend Lord Winston to ask the Question standing in his name on the Order Paper.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)]

My Lords, as set out in the 10-year health plan, this Government have an ambition to offer newborn genomic testing as part of routine NHS care, subject to evidence gathered through the Generation Study, which is using whole-genome sequencing to test 100,000 newborns for over 200 rare conditions. With advice from the UK National Screening Committee and appropriate funding, genomic testing could be available for all newborns in the UK by 2035.

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[Baroness Thornton (Lab)]

I thank my noble friend the Minister for that Answer, because this is of course a very serious issue, particularly in the case of babies and minors. There are grave difficulties in obtaining informed consent. Every person may be born with hundreds of genetic mutations potentially associated with fatal diseases, but nearly all are unlikely to cause serious health issues in the vast majority of those carrying such markers. Can my noble friend say what plans the Government have for funding and ensuring properly informed consent in screening programmes? I thank my noble friend Lord Winston for informing my question.

[Baroness Merron (Lab)]

My Lords, the Generation Study is particularly designed to inform policy of the type that my noble friend is rightly concerned with. These are extremely important issues, and I am glad to have spoken to our noble friend Lord Winston about these matters. Perhaps I could give the assurance that the study will test only for treatable conditions, where there is robust evidence that the condition is highly likely to develop within the first five years of life, and suspected positive results are then reviewed and confirmed through further tests. If genomic testing is used within future screening programmes, informed consent will still be required.