Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to consult with charities and patient organisations on whole genome sequencing.

Genomics England has consulted charities, patient groups and participants from the 100,000 Genomes Project during the development of consent materials for the use of data from whole genome sequencing in research. Genomics England has also engaged with and sought input from charities and participants as it explores how best to realise the ambition to sequence five million genomes.

The NHS Genomic Medicine Centres established by NHS England to support the delivery of the 100,000 Genomes project have engaged with patients, the public and the independent sector. In addition, as part of the development of the NHS Genomic Medicine Service, NHS England is working with charities and patient organisation to help develop patient facing materials and information that will be used to support the introduction of whole genome sequencing in the National Health Service.

The Government is committed to making the United Kingdom home of genomic healthcare and the National Genomic Healthcare Strategy, which we plan to launch in autumn 2019, will set out how the genomics community can work together to make the UK the global leader. The Government is consulting widely - including with charities and patient organisations - in the development of the National Genomics Healthcare Strategy.