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), whether any DNA samples collected for the Generation Study are (1) tested for conditions that may develop after five years old, and (2) kept for genome sequencing again at five years old.

The Generation Study is designed to inform policy around the use of genomics in newborn screening. The study is only testing for treatable conditions where there is robust evidence that the condition is highly likely to develop within the first five years of life. Suspected positive results are reviewed and confirmed through further tests. If genomic testing is used within future screening programmes, informed parental consent will still be required. There are no plans to screen for conditions that appear later in life or remain asymptomatic. If genomic testing becomes part of routine screening, parental consent would be required.

There are currently no plans as part of the study to sequence the genome again at five years old.