In the U.K. today, The Guardian's front page blares "NHS medical research plan threatens patient privacy." The story centers on a proposal to allow researchers to mine National Health Service (NHS) records to identify people with specific medical conditions who might consider a clinical trial. That's disturbing to the chair of an NHS watchdog group, says the paper:
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."
The proposal comes a few months after a U.K. report that outlined some of the pro and cons of data sharing.