Genome Screening: Newborn Infants

Debate between Lord Mohammed of Tinsley and Baroness Merron

Thursday 18th September 2025 Lords Chamber

[Baroness Merron (Lab)]

As I mentioned to the noble Lord, Lord Kakkar, the matter of ethics is crucial in this development. It might help if I restated— I absolutely understand the noble Lord’s point—that that is why the Generation Study, which is directed at newborns, is for treatable conditions that may develop in the first five years of life, not later on. I understand why that would be of concern, and similarly of concern to my noble friend Lord Winston, so I hope that assurance will be helpful.

[Lord Mohammed of Tinsley (LD)]

My Lords, I just want to return to the issue of data and consent and build on the question from the noble Lord, Lord Winston, that the noble Baroness, Lady Thornton, talked about. Given that a newborn child cannot really provide consent for whole-genome sequencing and that the information collected has lifetime implications, what specific measures will the Government take to ensure that a child’s future rights to privacy and autonomy are protected, particularly concerning the storage and potential reidentification of their genetic data in research libraries?

[Baroness Merron (Lab)]

There were a number of very helpful points in there. To reconfirm and satisfy your Lordships’ House, this is for conditions that may develop up to the age of five. As with all screening, consent is required. As the noble Lord rightly says, a baby of course cannot consent, but the parents can. Around the age of 16, the plan is also to be able to seek that consent again from the young person. On data storage, it is stored securely in a research library run by Genomics England. Access is tightly controlled, overseen by an independent committee and permitted only within a secure environment. If the noble Lord would like more details, I would be very happy to provide them.