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Lord Mohammed of Tinsley (LD)

Speaking in the House of Lords on 18 September 2025

Debate

Genome Screening: Newborn Infants

Contribution

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?

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