The UK Department of Health (DH) have officially released information about the new organisation Genomics England (see previous news), following the launch announcement by Health Secretary Jeremy Hunt.
It is a company owned by the DH that ‘will introduce high-tech DNA mapping for cancer patients and those with rare or infectious diseases and link that new data to the patient’s medical records’ i.e. as expected, implement the 100,000 genomes project announced last year. It is to provide ‘the investment and leadership needed to dramatically increase the use of this genome technology in this country, and drive down costs’. The £100 million funding will also be used to train healthcare professionals in the clinical application of genomic data, and new genetic scientists to develop novel treatments.
Speaking at an event to mark the 65th birthday of the NHS itself, Mr Hunt emphasised the need for improved understanding of disease and treatments tailored to individual patients, adding: "Combine the information from genomes with the information in digital medical records - all done with proper consent - and you have the most remarkable treasure trove about the make-up of diseases with huge clues as to how to treat them".
So far two Board members have been announced: Sir John Chisholm (previously chair of the Medical Research Council) as Executive Chair and Professor Mark Caulfield as Chief Scientist. Genomics England will manage the contracts for ‘specialist UK-based companies, universities and hospitals’ to supply sequencing, data linkage and analysis services, and will retain responsibility for regulating issues of data storage and security and patient consent to participation. Profits will be reinvested in the NHS.
Sir John said: “This project represents a great opportunity to translate our world class genomic science into world leadership in genomic medicine…Participating patients will have the opportunity to benefit from clinical insights derived from the sequencing of their genome while at the same time contributing to knowledge which will be valuable to the whole patient community. It is from that knowledge that world leading therapeutic products and processes will become available to all patients”.
Commenting on the news for the PHG Foundation, Director Dr Hilary Burton said: “We welcome this innovative and exciting initiative, which focusses on a future where gene sequencing will be an integral component of diagnosis and care for the UK population. Genomics England rightly pays attention to patient consent and management of personal data – important elements to maintain public trust. Two things are missing from our point of view. Firstly there is a great deal of work to be done to develop tests that are sufficiently accurate, sensitive and accessible to clinicians. Secondly, there should be explicit recognition of the complexities of eventually embedding these testing services into new healthcare and public health programmes. In our experience this is far more complex than simply ‘training the healthcare communities in how to use the technologies’ and will require a parallel and dedicated programme examining such elements as service design, commissioning and evaluation”.