Doctors prepare to betray patients’ confidence
The General Medical Council is to allow doctors to hand over patient records in the name of scientific research
Once upon a time, you could trust your doctor with your secrets as well as your life. If you were suffering from, say, an embarrassing venereal disease, you could be sure that your GP would keep this fact to himself. After all, doctors are not just bound by the law but by tight ethical rules set out by the General Medical Council.
You might not have quite so much faith in future. Because now, it seems, it's okay to share your medical history with researchers entirely unconnected with your care. And what's more, they don't even have to tell you about it.
‘It simply won’t occur to researchers on big projects to get consent’
The GMC's current guidance on confidentiality is getting on for ten years old now which, in the world of IT, makes it practically Neolithic. What's more, the academic community has spent much of the last decade fretting that current rules on re-using records pose a threat to medical research.
And so the regulator has put together an update, which considers the ethics of sharing records with researchers. (A final version is not yet available, but the GMC says little will change from the current draft.) Ideally, it says, records should be made anonymous; if that won't do, then doctors should ask patients for their consent.
So far, so good. The interesting part is what comes next. Doctors can disclose identifiable patient information, the GMC says, if it can be 'justified in the public interest' and it's not practical to seek consent. If there are a large number of records, or if it would require 'unreasonable effort' to track down the patients in question, records can be passed on as they stand.
In other words, if the research is important enough, and finding you is hard enough, your doctor can hand over your medical history to a complete stranger, with your name on it, without telling you. And they will still be within the ethical limits prescribed by the GMC.
This has caused uproar in the small-but-noisy patient privacy lobby. What it hasn't caused is surprise. They point out that the working group that drew up the new GMC guidance included Sir Mark Walport, the director of the Wellcome Trust and a vocal supporter of opening up NHS records to the research community. His presence - unbalanced by any equally vocal opponent of shared records - made the result a foregone conclusion, they say.
And, argues Ross Anderson, chair of the Foundation for Information Policy Research, the safeguards meant to protect patient privacy are nothing more than "flummery". With enough data points, anonymised records can still be traced back to individual patients.
The regulated 'safe havens' responsible for scrubbing personal details are entirely theoretical. And that clause asking doctors to consider what is practical means that "it simply won't occur to researchers on big projects to get consent. They'll just tick the box that says it's impossible".
Most patients are probably pretty relaxed about all this: if there's a cure for cancer in the offing, say, letting a few strangers read about the leg they broke in 1991 may seem a price worth paying. And the GMC has confidence in its safeguards. Security breaches "can never be ruled out", says policy adviser Michael Keegan. "But that possibility already exists, and it always has."
But medical histories can be valuable: everyone from potential employers to mortgage lenders would pay a lot of money to check whether you have a chronic condition or a family history of sudden death. Many would pay enough money, in fact, for safeguards like the Data Protection Act to seem nothing more than a mild inconvenience. The more widely your records are shared, the further they go from your doctor, the more likely they are to reach someone who could affect your career or your finances.
What's more, reckons Professor Anderson, by allowing records to be shared without consent, the guidelines might actually breach EU law. If he's right, that would put a sizeable dent in the very concept of medical ethics.
"The GMC's become a tame tabby cat," he says. "Go back to the early nineties and all sorts of things were legal but unethical. Now it's the other way around. Medical ethics will lose its force."
Opening patient records up to researchers may produce great breakthroughs. But still, doctors might find themselves wondering if it is a step too far. ·
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