Genome Screening: Newborn Infants

Lord Kakkar Excerpts

Thursday 18th September 2025 Lords Chamber

[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.

[Lord Kakkar (CB)]

My Lords, I draw attention to my interest as chairman of UK Biobank. The value of large-cohort studies is not only in the collection of baseline data, and indeed, in this case, the genome sequences of the 100,000 newborns, but in the opportunity to secure the long-term longitudinal follow-up of participants, so that there is a broader understanding of the change in health and health dynamics.

The Minister mentioned the question of consent with regard to genetic testing, but there is another question of consent, with regard to long-term access to the primary care data of those individuals who have participated in the study. Is the Minister content that there are appropriate arrangements in place with regard to consent to ensure long-term access to primary care data for those individuals?

[Baroness Merron (Lab)]

The noble Lord raises a very good point. Certainly, it is part of how we develop the use of data. I am aware that he did not directly ask me this, but perhaps I might use the opportunity to say that data safety, which I know is a matter of concern to many noble Lords, is absolutely paramount here. We also have absolute regard to conducting studies ethically, but the point about primary care data, its use and its value, as well as its safety, is very well made and one which we are certainly developing still further.