100,000 Genomes Project

Department of Health and Social Care written question – answered on 10th July 2019.

Alert me about debates like this

Photo of Lord Scriven Lord Scriven Liberal Democrat

To ask Her Majesty's Government whether those who have taken part in the NHS 100,000 Genome Project are being denied access to their own genome data; and if so, why.

Photo of Baroness Blackwood of North Oxford Baroness Blackwood of North Oxford The Parliamentary Under-Secretary for Health and Social Care

Genomics England is committed to returning results to every patient in the 100,000 Genomes Project via their National Health Service clinical team. All of the patient results will have been returned to the NHS by the end of the year.

Under the Data Protection Legislation, participants in the 100,000 Genomes Project can request their genomic and clinical data. However, a whole genome sequence is around 3 billion letters long and written in code so it is very difficult to interpret. Genomics England can provide access to a visual representation on request or provide access to the raw data. A NHS clinical team is the best route to providing a clinical interpretation of the genome results.

Does this answer the above question?

Yes0 people think so

No0 people think not

Would you like to ask a question like this yourself? Use our Freedom of Information site.