Genome Screening: Newborn Infants

Lord Jopling Excerpts

Thursday 18th September 2025 Lords Chamber

[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.

[Lord Jopling (Con)]

My Lords, while the screening of genomes in newborn infants is of course very important, it is even more important to find a cure for some of these dreadful hereditary diseases—I am thinking particularly of Huntington’s chorea. Does the Minister have any information as to what progress is being made, with a prospect some time, before too long, of having a cure for this dreadful disease?