The rights and wrongs of privacy

Patient data: Should doctors have to ask permission?

Doctors are saying that confidentiality guidance could stifle research into killer diseases.

At what point should the needs of medical research outweigh the rights of patients to complete confidentiality?

BBC News Online examines what is an increasingly fraught area for doctors and researchers.

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Historically, the individual privacy of patients has been somewhat of a side-issue for doctors taking part in medical research projects.

The idea of spreading tittle-tattle about their patients outside the consulting room is abhorrent to the vast majority of doctors, but a patient's right to privacy from the medical researcher is entirely another matter.

This right has been universally traded off against the promise of insights into the causes of disease which kill and maim thousands.

In the dark

In the atmosphere of "doctor knows best" which prevailed in past decades, even those few patients who realised what was going on tended to accept it.

Seek patients' consent to disclosure of any information wherever possible, whether or not you judge that patients can be identified from the disclosure

GMC advice on confidentiality

However, a new era of patient involvement - not to mention various scandals - mean that such practices are far less acceptable, and doctors more fearful of the prospect of ending up in court, or up before the General Medical Council.

Common law has always suggested that the vast majority of patients have the absolute right to confidentiality within the doctor-patient relationship.

However, it is arrival of the latest incarnation of the Data Protection Act which has really set the cat among the pigeons.

Prior to 1998, data protection was always a rather flimsy discipline - but the new Act tightened things up considerably.

In particular, in its first breath, it demanded that "personal data" be processed "fairly and lawfully" - thus rubber stamping for doctors a legal principle to which it had turned a semi blind eye for decades.

However, the interpretation of this law is a tricky business.

Conflicting advice

When the General Medical Council came to produce guidance for doctors, it received a number of legal opinions - all of them conflicting.

It's ridiculous that a doctor has to release information about cases of measles, but may be struck off if he does so about cancer

Professor Michel Coleman, London School of Hygeine and Tropical Health

Its eventual guidelines took a safety first approach, saying: "Seek patients' consent to disclosure of any information wherever possible, whether or not you judge that patients can be identified from the disclosure."

This, in effect, means that doctors should be making considerable efforts to get the necessary consent - certainly far more than many do already.

The guidance was greeted with howls of outrage from the profession - despite the fact that it was simply a conservative appraisal of existing law.

However, there are some areas in which doctors insist that gaining consent is totally impractical.

Large scale epidemiological surveys, involving thousands of patients past and present, would be unnecessarily hamstrung by the need to contact each of them to check their willingness to participate.

In addition, they say, even if this was possible, it only takes a relatively small number of "abstainers" to render the analysis far less useful to scientists.

Compulsory disclosure

In effect, say leading researchers, the only long-term solution is to remove the need for consent to the use of anonymised patient data in various disease areas - particularly cancer.

World-renowned epidemiologists Professor Richard Doll and Richard Peto wrote in the British Medical Journal: "The right to medical care should, we suggest, generally continue to include the responsibility to allow the information gained in its course to be used for the benefit of others who develop a similar disease, or who are at risk of developing it."

There is already compulsory disclosure for various communicable illnesses - such as tuberculosis, and even more minor illnesses.

Professor Michel Coleman, an epidemiologist from the London School of Hygiene and Tropical Medicine, said: "It's ridiculous that a doctor has to release information about cases of measles, but may be struck off if he does so about cancer."

More than a dozen European countries have compulsory reporting systems of this type which extend to cancer.

Doctors insist that there is little chance of disclosed data finding its way into the wrong hands.

One leading epidemiologist claimed that he did not know of one case in 40 years of information from the National Cancer Registry being wrongly disclosed.

However, this is not a decision that the medical profession can take unilaterally - legislation will be required.

The government faces the unpalatable choice of either surrendering patient rights to further clinical research at a time when the average patient is clamouring for more rights, not fewer, or risking a slow-down on research which could be saving or prolonging lives.