Health Secretary Jeremy Hunt made the announcement today, on the NHS’s 65th birthday, alongside plans to make the NHS a personal service for every patient.
In December, Prime Minister David Cameron announced that the personal DNA code – known as a genome – of up to 100,000 patients or infections in patients will be sequenced over the next 5 years. This will improve understanding, leading to better and earlier diagnosis and personalised care. Based on expert scientific advice, the Department of Health (DH) has initially prioritised sequencing of lung and paediatric cancer, rare diseases and infectious diseases.
The project will be run by Genomics England, an organisation entirely owned by DH. Genomics England will manage contracts for specialist UK-based companies, universities and hospitals to supply services on sequencing, data linkage and analysis. It will set standards for obtaining patients’ consent and also strictly manage storage of personal data in accordance with existing NHS rules designed to securely protect patient information. It will have the independence and clout to drive innovation across systems and healthcare economies.
Marking the NHS’s 65th birthday with plans to make every element of NHS treatment more tailored around individuals’ needs, Health Secretary Jeremy Hunt said:
The NHS has a long track record as a leader in medical science advances and it must continue to push the boundaries by unlocking the power of DNA data.
The UK aims to become the first country to introduce this technology in its mainstream health system - leading the global race for better tests, better drugs and above all better, more personalised care to save lives.
Genomics England will provide the investment and leadership needed to dramatically increase the use of this technology and drive costs down.
Genomics England will be funded by DH in the medium term, and any surplus will be invested back into improving health. It will be chaired by former chair of the Medical Research Council, Sir John Chisholm.
Sir John said:
This project represents a great opportunity to translate our world class genomic science into world leadership in genomic medicine. Genomics England will create a dataset of anonymised whole genome sequences matched with clinical data at a scale unique in the world.
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.
It is estimated that up to 1 in 17 people is born with or develop a rare disease during their lifetime. At least 80% of rare diseases have an identified genetic component, with 50% of new cases of rare diseases being identified in children. However, it can take considerable time and expense between a patient first presenting to a doctor and receiving an accurate diagnosis. The time taken to sequencing a whole human genome has been reduced to 1 to 2 weeks and will become more affordable for routine use as the price continues to fall.
Through partial sequencing in research projects of affected children or in infections, such as HIV, TB and Hepatitis C, scientists are already on the way to developing more effective treatments that personalise care.
Chief Medical Officer Professor Dame Sally Davies said:
By putting firm foundations in place through Genomics England, this technology will let us make ground-breaking discoveries about how diseases work, who could be susceptible to them, how we can treat them, and what treatments might work.
Earlier diagnoses will help to reduce uncertainty and stress for patients and families involved.
Up to £100 million of funding pledged by the government will:
train a new generation of British genetic scientists to develop life-saving new drugs, treatments and scientific breakthroughs
train the wider healthcare community to use the technology
fund the initial DNA sequencing for cancer and rare and inherited diseases
build the secure NHS data linkage to ensure that this new technology leads to better care for patients
Minister for Universities and Science David Willetts said:
The UK is very well placed to be at the forefront of genomics research and translation. As set out in the life sciences strategy, we have world-class medical scientists, a strong pharmaceutical industry and a unique resource of patient data thanks to the NHS.
Harnessing these together to work on this pioneering technology will provide unparalleled insight into disease, helping us develop new, more targeted and effective treatments for patients.
Under the leadership of Sir John, Genomics England will begin developing its structures over the coming weeks and producing its business plan. He will lead further engagement with the appropriate patient groups and safeguards, building on advice, published today, from DH-commissioned working groups on ethics, science and data. Genomics England’s Chief Scientist will be Professor Mark Caulfield, a NIHR Senior Investigator at the Queen Mary University of London and the Barts National Institute for Health Research Biomedical Research Unit.