The Department of Health has announced the birth of Genomics England – a state-owned company charged with overseeing the mapping of National Health Service patients’ DNA.
The new group, under the direction of former chair of the Medical Research Council Sir John Chisholm, will seek inward investment and manage contracts for UK-based companies, universities and hospitals involved in the supply of services relating to DNA sequencing, data linkage and analysis.
Backed with a government pot of £100 million, it will focus on training “a new generation” of genetic scientists to spur the development of life-saving new drugs, treatments and scientific breakthroughs, as well as fund initial DNA sequencing.
The DH has confirmed that the genetic analysis of lung and children’s cancers, rare diseases and infectious diseases has been prioritised for the new project which, according to Cancer Research UK’s executive director of policy and information Sarah Woolnough, “should help save more lives from cancer in the future”.
“Crucially, it means unearthing a variety of new information that scientists can use to learn more about the biology of cancer in order to develop new ways to prevent, diagnose and effectively treat the disease,” she explained.
Making the announcement to coincide with the NHS 65th birthday and the blossoming future of personalised medicine, health secretary Jeremy Hunt said the NHS must continue to push the boundaries of scientific advances “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,” he said, stressing that “Genomics England will provide the investment and leadership needed to dramatically increase the use of this technology and drive costs down.”
Stephen Whitehead, chief executive of the Association of the British Pharmaceutical Industry, welcomed the initiative.
“Being able to link genomics with health records will strengthen the UK’s position as a leader in this field,” he said, and noted that “it will be key to driving further research into stratified medicines – treatments tailored to those most likely to respond – and ultimately will help scientists and pharmaceutical companies create more targeted medicines to benefit patients”.
But, while Genomics England has been tasked with setting ground rules for obtaining patient consent and the management of personal data storage, there remains concern over privacy and the misuse of information.
Privacy group Ethics and Genetics said recently that following a freedom of information request the DH confirmed that “any release of data must be lawful and with appropriate permissions data could be released in anonymised, pseudonymised or identifiable form”.
It cautions over the potential for certain marketing practices that would be facilitated by companies’ ability to link up anonymous medical data to individual patients.