Jeremy Hunt, the health secretary. Photograph: Jonathan Brady/PA
About Author
Profile
Randeep Ramesh is social affairs editor for the Guardian. He was the paper's south Asia correspondent for six years and a leader writer for the paper, specialising in globalisation. He was a City news editor and worked on the home news desk. He has won Scoop of the Year and What the Papers Say Investigation of the Year for work on parliamentary lobbying scandals
Genomics England will aim to attract private investment in life sciences, but campaigners raise patient privacy concerns
The health secretary is launching a new government organisation to oversee the creation of a genomic revolution in healthcare that will attract big business investment, but which will raise concerns over patient privacy in the NHS.
Using the NHS's 65th birthday to push for a new "personalised" medical service, Jeremy Hunt will launch Genomics England, a state-owned entity led by Sir John Chisholm, a former chair of the medical research council who made millions from the sell-off of the government defence firm QinetiQ.
With the health service reeling from a series of regulatory scandals over patient care, the government has chosen an opportune moment to make the case for Genomics England, which will aim to attract investment from companies interested in building a new life sciences industry alongside the NHS by offering them cash from a ringfenced partnership fund, currently valued at £300m.
In May the prime minister announced that £10m from this fund would be used to match the Chinese billionaire Li Ka-shing's £20m donation to Oxford University's big data healthcare centre, which plans to analyse NHS patient records, DNA sequencing and clinical trials in an effort to improve detection and treatment of a range of conditions.
Hunt will tell a hand-picked audience at a London hospital that "by 2015 the aim is to put the UK at the forefront of the genome revolution worldwide, with whole-genome sequencing linked to patient diagnosis, treatment and care".
However, critics say the commercial push combined with a plan to create a DNA databank – to match those in countries such as the US and Japan – plus a subtle relaxing of patient privacy rights should be a matter of public concern. They point out that DNA differs from other sensitive health data in that it can be used as a tool to identify and track individuals and their relatives.
Campaigners say that a series of changes to the NHS will allow patients, who do not opt out of the system, to be cold-called by their GP on behalf of private companies to ask whether they would take part in clinical studies.
From this year there will be a default assumption that patients can be contacted to take part in clinical trials. With the government enforcing a rule to share medical data, pharmaceutical firms would be able to identify patients for drug trials because their case history and genetic makeup suggests they are susceptible to particular diseases.
Responding to a series of requests under the Freedom of Information Act, the Department of Health admitted that the NHS could contact patients about trials run by "academic institutes, third sector and commercial companies", a right enshrined in the new health service constitution.
The pharmaceutical industry argues that the change is necessary because of the need to cut costs in drug development, which traditionally has involved testing new treatments on groups that are representative of the general population rather than patients who have been specially selected.
Edward Hockings, a bioethicist from the pressure group Ethics andGenetics, who made the FoI requests, said: "We are moving closer to the American system in which pharmaceutical companies can buy patient data and target people with aggressive marketing."
He said he was concerned about why the government had not been clearer about its intentions and the risks involved. "The benefits of doing this will not accrue to the people whose data it is, but to private companies," he said.
"At no point have the government sought to ask the public what they think about selling intimate, personal medical information, commercialising genetic data held on a central database or making NHS users available for clinical trials."
0 comments:
POST A COMMENT