Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the remarks by Baroness Merron on 18 September (HL Deb cols 2398–2400) about genome screening of newborn infants, how long (1) newborn infants' DNA samples, and (2) genome sequencing data, will be kept.

Data and samples are stored for 16 years. At approximately 16 years old, children who participated in the study will be asked to give their own consent to remain in the programme. If they choose not to or if they cannot be contacted, they will be withdrawn from the study, which includes removing their sample. If they consent to remain in the study, then their data and sample would be stored throughout the child’s life, unless consent is withdrawn. Parents are also able to withdraw their children from the study at any time before children reach the age of 16 years old.