Genomics England, an organization owned by DH, has launched a personal DNA code project. The personal DNA code—known as a genome—of up to 100,000 patients or infections in patients will be sequenced over the next five years.
Genomics England will manage contracts for specialist U.K.-based companies, universities and hospitals to supply services on sequencing, data linkage and analysis. It will set standards for obtaining patient consent and also manage storage of personal data in accordance with existing NHS rules designed to protect patient information.
“The U.K. 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 personalized care to save lives,” said Jeremy Hunt, DH secretary.
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 John Chisholm, former chair of the Medical Research Council.
“Genomics England will create a dataset of anonymized whole genome sequences matched with clinical data at a scale unique in the world,” said Chrisholm. “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 one in 17 people is born with or develop a rare disease during his 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 sequence a whole human genome has been reduced to one to two weeks and will become more affordable for routine use as the price continues to fall.
“By putting 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,” said professor Sally Davies, chief medical officer.
Up to $128 million of funding pledged by the government will train a new generation of British genetic scientists to develop 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; and build the secure NHS data linkage to ensure that this new technology leads to better care for patients.