In 2018, then Health and Social Care Secretary, Matt Hancock, announced the 'ambition to map 5 million genomes' as announced in this link: https://www.gov.uk/government/news/matt-hancock-announces-ambition-to-map-5-million-genomes
In this ambition, it was stated that:
'From 2019, all seriously ill children will be offered whole genome sequencing as part of their care.'
AND
'Adults with certain rare diseases or hard-to-treat cancers will also be offered the same option from 2019.'
There are four questions I have based on these statements.
1. What is the total number of patients in Wales which been successfully mapped?
2. What is the total number of adults mapped in Wales?
3. What is the total number of patients in Wales mapped as a result of glioblastoma multiforme (GBM) diagnosis?
4. What is the total number of patients in Wales mapped as a result of a diagnosed or suspected brain tumour?
Thank you for your recent request dated 13th January 2023.
Public Health Wales (PHW) do not hold this data or have access to it as it is linked to Human sequencing. At PHW we only interpret pathogen sequences (viruses, bacteria and fungi).
You may wish to try contacting Genomics Partnership Wales, who may be able to help you.
Their website is available here https://genomicspartnership.wales
If you are unhappy with the service you have received in relation to your request and wish to make a complaint or request a review of the decision, you should write to the Corporate Complaints Manager, Public Health Wales NHS Trust, 3, Number 2, Capital Quarter, Tyndall Street, Cardiff, CF10 4BZ.
If you are not content with the outcome of your complaint or review, you may apply directly to the Information Commissioner for a decision. Generally, the ICO cannot make a decision unless you have exhausted the complaints procedure provided by the Trust. The Information Commissioner can be contacted at:
Information Commissioner for Wales
2nd Floor
Churchill House
Churchill Way
Cardiff
CF10 2HH
Telephone: 029 2067 8400
Email: wales@ico.org.uk