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Lord Clement-Jones moved Amendment No. 65A:

(" . In Schedule 3 to that Act (conditions relevant for the purposes of the first data protection principle: processing of any personal data) in paragraph 8(2) after the words "medical research" there is inserted "for the purpose of monitoring the public health".").

The noble Lord said: My Lords, Amendment No. 65A is an unashamedly opportunistic amendment to the Data Protection Act 1998 which is designed to take advantage of Schedule 6 of this Bill. It reflects a great deal of anxiety being experienced by public health professionals as a result of guidance given by the General Medical Council and the interpretation of the 1998 Act about the way that it affects public health monitoring, particularly the cancer registries and the notification of disease and infection.

Earlier this year the GMC produced new guidance on confidentiality which was designed to bring medical practices into line with modern law and ethics. Paragraph 22 of the guidance states,

    "Professional organisations and government regulatory bodies which monitor public health or the safety of medicines or devices, as well as cancer and other registries, rely on information from patients' records for their effectiveness in safeguarding the public health".

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However, paragraph 23 goes on to state,

    "Where personal information is needed, you should seek express consent before disclosing information, whenever that is practicable".

Paragraph 27 of the guidance concludes,

    "The automatic transfer of personal information to a registry, whether by electronic or other means, before informing the patient that information will be passed on is unacceptable save in the most exceptional circumstances".

The new guidance therefore essentially assumes either patient consent to disclosure to a registry or that data provided is "anonymised". Yet the fact is, as cancer registries and public health professionals have made clear to the GMC and the Department of Health, consent is sometimes difficult if not impossible to obtain sensitively and risks damaging the doctor-patient relationship. If information is not provided because of failure to obtain consent, the lack of those data can distort overall figures for cancer outcomes. The alternative avenue of anonymising data is not satisfactory when incidence and outcome by locality can be of great importance and personal identifiers are needed for cross-checking sources and avoiding double counting, and for linking to death certificates in order to estimate survival.

The UK Association of Cancer Registries believes that the requirement for explicit consent would,

    "in effect destroy the population based coverage of cancer registries".

The GMC's approach, and indeed that of the Data Protection Commissioner, appears to be part legal and part ethical. The legal advice received by the GMC seems to interpret the Data Protection Act very restrictively, so that as regards Schedule 3, paragraph 8, which sets out the conditions relevant for the purposes of judging whether information has been processed fairly and lawfully, the GMC clearly did not consider that monitoring for public health purposes was encompassed within the term, "medical purposes".

The ethical objections were put by Sir Cyril Chantler in a recent letter to The Times. In the letter he said that the GMC did not believe that it is legally or morally acceptable for doctors to pass personal information about patients to others without the patients' knowledge or consent save in exceptional circumstances. I entirely agree with that proposition. However, he added that,

    "Parliament has the power to legislate to make notification of a diagnosis of cancer compulsory".

It therefore seems, certainly in the eyes of the GMC, that it is possible to overcome the ethical objections to providing personal data if Parliament recognises certain exceptional circumstances by statute. That is why Schedule 3 to the Data Protection Act does that for medical purposes generally, and it could perfectly well include public health monitoring in that exception.

The failure to recognise that these are exceptional circumstances and delay in tackling the problem will

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put at risk an unrivalled system for production of public health information. As the registries themselves state,

    "The continuity of data collection is now threatened directly".

The Select Committee on Science and Technology, in its report on cancer research in July, said,

    "These registries have been in operation for 40 years and comprise the largest national collection of such data in the world; they have been the source of a very large volume of research into the causes, prevention and treatment of cancer and survival from cancer".

That is now at risk.

The health Minister in this House, the noble Lord, Lord Hunt of Kings Heath, has with great courtesy written to me on the subject in response to my inquiries. However, the bare fact is that an enormous lack of urgency is being displayed. The GMC has indicated that it will not enforce its guidance until October 2001. That is but a temporary solution; action needs to be taken urgently in the meantime to find a permanent solution if registries are not to have their activities interrupted.

The Minister's letter to me states:

    "The GMC guidance has drawn attention to the fact that a range of essential NHS and related activity, including that of cancer registries, lacks a secure basis in law".

The letter goes on,

    "I can assure you that the Department of Health will do all that it can to support the work of cancer registries and other essential activity. If necessary, legislative solutions will be sought".

I welcome that statement and the fact that the director of health services, Dr Adams, has been tasked to find a solution, but as regards cancer registries the issues were clearly raised in the report of the Science and Technology Select Committee, to which I referred earlier. It was published in July this year. It was extremely concerned by the implications of the current law and the guidance from the GMC. It recommended that cancer registration should be a legal requirement.

My amendment does not go as far as that. The cancer tsar, Professor Mike Richards, also raised the issue. Why have the Cabinet Office, the Home Office and the Department of Health not shown a more keen appreciation of the issues and acted earlier? The situation has been described by some onlookers as paralysis. The Freedom of Information Bill, with all the other changes it makes to the Data Protection Act, is clearly the ideal instrument for making the necessary changes in this case. This would provide the legal basis for the change to the GMC guidance and also demonstrate that the Government believe that an overriding public purpose is involved in public health monitoring.

The US guidance on confidentiality, given by the US Secretary for Health and Human Services, clearly makes such an exception. The Government's recent national cancer plan states:

    "Public health benefits depend on the completeness of cancer registration in the population. The Government is determined to secure the future of cancer registration and will take the necessary action to do this".

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I hope that the Government will express that determination by accepting the amendment. I know that the noble Lord, Lord Turnberg, has an even broader set of concerns in relation to infectious disease and they are equally as important as those that I have raised tonight. I hope that the Minister will accept from both of us that the concerns are important and require urgent action. I beg to move.

Lord Turnberg: My Lords, I am conscious of the hour and I shall try to be brief. This is an important matter and I speak from the point of view of my special interest which I shall declare as chairman of the board of the Public Health Laboratory Service. Your Lordships may know that it is a statutory body set up by the Department of Health with the specific remit to protect the public from infectious diseases. The amendment seeks to remove the potential damage to that public protective role.

The PHLS traces the sources of infection by testing samples from patients, from food, water and the environment and by analysing and using the test results to activate a search for the sources of outbreaks and prevent the further spread of infection. That chain of activities relies heavily on doctors providing specimens from patients--for instance, blood, throat swabs and so forth--and laboratories reporting results, when they reveal an infectious disease, to our Communicable Disease Surveillance Centre. That is how cases of meningitis, TB, E.coli 0157 food poisoning and a myriad of other serious contagious diseases are detected and, most importantly, how the sources of those infections are traced. All that needs to be done quickly if the rapid spread of infection is to be avoided.

Let us imagine the situation in which a specimen from a patient is sent to one of our laboratories and the patient is found to have E.coli 0157. In order to get the patient's permission to let our surveillance unit know that this infection has been found, the laboratory must contact the GP. The GP must then contact the patient to obtain consent before the information can be passed on. Tracing GPs and then patients will not be an instantaneous process and precious time will be lost.

One might say that consent should have been obtained when the specimen was taken. The fact is that most patients with symptoms, for example gastric upsets, will not have E.coli infections. One cannot raise fears in all patients by discussing this potential with everyone in advance. Remember that in these circumstances speed is of the essence. At the moment doctors and laboratories face the dilemma of trying to seek consent from individuals at a time when delay poses threats to the community at large.

Unfortunately, the guidelines recently produced by the General Medical Council are based on a strict interpretation of the law and allow little leeway for doctors to provide information about their patients without their specific consent to the PHLS and others concerned with trying to nip outbreaks in the bud.

We already sense a reluctance among doctors and laboratory staff to report infections for fear that they may be brought to the attention of the GMC. That

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cannot be good for the public at large, and it is inconceivable that individual patients will interpret the use of such information as an infringement of their rights. The sharing of information between responsible professionals in organisations with high standards of confidentiality for such important purposes is not just reasonable but essential. I hope that the Minister will consider the implications of this amendment in a very favourable light.


Lord Falconer of Thoroton: My Lords, I have listened carefully to the reasons given by the noble Lords, Lord Clement-Jones and Lord Turnberg, for tabling this amendment. I do not believe that the amendment achieves the intention, but I hope that what I say will provide a degree of comfort. Put simply, the concern of the noble Lord is to ensure that the Data Protection Act 1998 does not prevent the medical data of individuals being used for certain medical research purposes, notably, but not solely, in relation to cancer registries, as the noble Lord said. I assure your Lordships that the Act does not have that effect. At present, the 1998 Act allows medical data to be used for any medical research purpose without the need for the consent of indviduals. It is not necessary to define the term "medical research", nor to make specific provision for it to include the monitoring of public health, which for these purposes is regarded as medical research.

It is desirable to seek consent wherever possible, but sometimes where the research is in the wider public interest it is necessary to go ahead without consent. The 1998 Act already allows that to take place. The noble Lord's amendment would make it more difficult, if not impossible, to conduct certain types of medical research without consent.

If there is difficulty at present--like the noble Lord, I am aware (because he drew it to my attention) that a few weeks ago there were press reports to that effect--it reflects the effect of the common law of confidence rather than the data protection legislation. Those reports suggested that cancer registries might be at risk. The Government are determined to secure the future of cancer registration and will take the necessary action to do so. We shall see what can be done without the need for fresh measures, but if there is no practicable alternative we shall introduce supporting legislation at the earliest opportunity.

Since the noble Lord's amendment does not achieve his intended purpose and it would make it more difficult to carry out certain types of medical research, which I know is not his wish, I invite him to withdraw it, particularly bearing in mind the assurances that I gave earlier in my remarks.

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