Genome Screening: Newborn Infants

Lord Kamall Excerpts

Thursday 18th September 2025 Lords Chamber

[Baroness Merron (Lab)]

I am grateful to the noble Lord and will be very pleased to write to him on that specific. Part of this work in the programme we are referring to is on treatable diseases. For example, the Generation Study covers hereditary fructose intolerance, which means that babies would not be able to ingest fructose normally. By identifying it, we can then recommend removing fructose from their daily diet, which is a way of overcoming that condition. So, by spotting the condition early, we can take action. As the noble Lord says, there are indeed a number of areas in which further work needs to be done, but I would be very glad to write to him on the detail.

[Lord Kamall (Con)]

My Lords, while genome screening of newborns is welcome and could be an important part of the prevention agenda, it raises a number of ethical issues. I will focus on just one: at what stage do you tell someone who has a high probability of getting a medical condition, say in their 40s or 50s, about the probability or even certainty of developing that condition, without causing undue distress or even premature treatment? Can the Minister briefly tell noble Lords about the conversations that are going on in the department about these ethical issues, perhaps with the medical profession, and perhaps write in more detail later?

[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.