Apparently it’s not your medical data, it’s the state’s
The privacy of millions of NHS patients will be critically undermined by a government plan to let medical researchers have access to personal files, the health information watchdog told the Guardian last night.
The prime minister and Department of Health want to give Britain’s research institutes an advantage against overseas competitors by opening up more than 50m records, to identify patients who might be willing to take part in trials of new drugs and treatments.
They are consulting on a proposal that is buried in the small print of the NHS constitution that would permit researchers for the first time to write to patients who share a particular set of medical conditions to seek their participation in trials.
It would result in patients receiving a letter from a stranger who knew their most intimate medical secrets, which would be regarded by many as a breach of trust by doctors who are supposed to keep information confidential. It raises the prospect of a letter being opened by a relative, which could cause embarrassment.
Harry Cayton, who is about to take over as chairman of the National Information Governance Board for Health and Social Care, the new watchdog on use of NHS data, said the proposal is “ethically unacceptable”.
He said: “There is pressure from researchers and from the prime minister to beef up UK research. They think of it as boosting UK Research plc. They want a mechanism by which people’s clinical records could be accessed for the purposes of inviting them to take part in research, which at the moment is not allowed. I think that would be a backward step.
“It would be saying there is a public interest in research that is so great that it overrides consent and confidentiality. That is not a proposition that holds up.”
Cayton said the government issued a handbook alongside the draft NHS constitution saying that researchers should be allowed to use care records, without the informed consent of the patient, to identify people suitable to participate in approved clinical trials.
He said: “We believe this is a breach of good practice in confidentiality and consent, and have questioned if there is a sound legal basis for it.”
Last year the prime minister asked Richard Thomas, the information commissioner, and Mark Walport, director of the Wellcome Trust, to review all aspects of data sharing.
They reported in July: “One area of research raises a Catch 22 dilemma. Researchers may wish to approach individuals in order to gain their consent to participating in a particular piece of research, for example the trial of a new treatment for a particular disease. The issue is how to identify these people in the first place. The requirement for ‘consent to gain consent’, which is largely limited to medical research, is a problem that requires a solution.”
Why can’t they be asked by their GPs if they consent to being approached by researchers?
No, let’s just use what we like, because Gordon and researchers think it’s a good idea.