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Lord Mackay of Ardbrecknish moved Amendment No. 10:



("( ) Where the accountable person gives a certificate to the Commissioner under subsection (2) he shall as soon as practicable thereafter lay a copy of the certificate before--
(a) each House of Parliament,
(b) the Northern Ireland Assembly, in any case where the certificate relates to a decision notice or enforcement notice which has been served on a Northern Ireland department or any Northern Ireland public authority, or
(c) the National Assembly for Wales, in any case where the certificate relates to a decision notice or enforcement notice which has been served on the National Assembly for Wales or any Welsh public authority.").

On Question, amendment agreed to.

[Amendment No. 11 not moved.]

5 p.m.

Schedule 6 [Further amendments of Data Protection Act 1998]:

Lord Clement-Jones moved Amendment No. 12:


    Page 71, line 4, at end insert--


(" . 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, in moving Amendment No. 12 I shall not repeat the points made at Report. I simply reiterate that my main motive in tabling amendments on Report and at Third Reading has been the threat to cancer registries potentially posed by an insistence that either all personal data imparted by clinicians to registries must be subject to patient consent or the insistence that information is wholly anonymised. In the view of the registries, that step would render the information of far less use.

Much of the past three weeks has been spent by me trying to get to the bottom of why that should be so and what can be done about it. Sometimes I have felt that I have been hunting the snark in trying to find out the real problems. However, I thank the GMC and the Data Protection Commissioner for their helpful briefings in that respect.

The Minister's statement on Report was also in many ways a breath of fresh air and helpful in pointing out that the Data Protection Act was not the sole culprit, but rather that the common law of confidence was perhaps the greater problem. The noble Lord, Lord Hunt of Kings Heath, and his officials in the Department of Health have also been helpful, not only in analysing the problem but in suggesting solutions and bringing together the interested parties.

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The problems faced by the cancer registries need to be looked at as a series of legal hurdles to overcome if they are to comply with the law and avoid prosecution. The first hurdle is posed by the Data Protection Act where the first data protection principle of fair processing of information needs to be satisfied, and the third principle relating to personal data being adequate, relevant and not excessive must also be satisfied.

As the Minister helpfully confirmed on Report, the Schedule 3 conditions for necessary medical purposes will almost certainly cover this type of public health monitoring. Both the department and the Data Protection Commissioner, however, consider that to qualify as "necessary" there will be an obligation on cancer registries to be satisfied that they really do need all the personal information they collect and to reduce it to the minimum, which is also necessary if the third principle is to be met. There will also need to be adequate information supplied by hospitals and clinics about the work of the cancer registries and the information supplied to them by medical staff so that patients understand what information is supplied and why.

I support the aim of providing better information in that respect to ensure greater awareness of those who are being treated. But that is a different matter from a requirement for consent or explicit consent which can be extremely difficult and, indeed, inappropriate to obtain. Given that, however, the major hurdle appears to be the common law duty of confidence and the protection of a patient's right to privacy.

The Source Informatics case, decided earlier this year, seems to be the legal precedent which is exercising the minds of lawyers advising the GMC, the Data Protection Commissioner and the Department of Health, although the facts of that case, which dealt with anonymised prescribing information being collated for commercial purposes, certainly does not seem to be four-square with the situation here. Indeed, it is slightly baffling since the Department of Health appears to be appealing that decision. I am not sure why it relies on a decision against which it is appealing. My noble friend Lord Lester played an illustrious role in that case, as those who know the case will know, on behalf of the GMC.

That said, the view appears to be that, despite the Data Protection Act, at common law it is not sufficiently clear whether there is a public interest defence in those circumstances for public health monitoring in general and cancer health registries in particular. I believe that the department and Ministers now accept the fact that legislation, probably both primary and secondary in nature, will need to be introduced at the earliest opportunity in order to clarify the situation and that the provision of such information is in the public interest. I very much welcome that acceptance and hope the Minister today will express a clear commitment in that regard.

Finally, at the end of this legal trail we have the Human Rights Act 1998 and the European Convention on Human Rights where cancer registries

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would need to show pressing social need and proportionality in collecting confidential information from patients. I hope that the early steps taken will allow those tests to be met. Clearly, as I outlined, a number of steps must be taken as a matter of some urgency by government if cancer registries are to continue with their work and not have interruptions or gaps in the data provided to them. In that context, the decision of the GMC not to enforce its code of confidentiality until October next year is to be welcomed.

I am pleased that the organisations involved, including the GMC, seem to be close to consensus about the way forward. However, it places a heavy responsibility on the Government to take the necessary action in the meantime. I look forward to the Minister's assurances in that respect. I beg to move.

Lord Falconer of Thoroton: My Lords, I have listened most carefully to the noble Lord, Lord Clement-Jones, on this occasion and on Report, and also to my noble friend Lord Turnberg, who expressed similar concerns in relation to public health work, including the tracing of communicable diseases.

We share the concern of the noble Lord, Lord Clement-Jones, for the future of cancer registries, but the amendment to the Data Protection Act will not help in the way he intends. As I shall explain, it is not primarily a data protection issue. I should like to reassure the noble Lord that the Government are taking these concerns seriously and will take whatever action is necessary to secure the future of cancer registration and other essential medical work, including work relating to public health. If there is no practical alternative, as I told the House on Report, we shall introduce supporting legislation at the earliest opportunity.

Perhaps I may briefly go through the points. The noble Lord, Lord Clement-Jones, knows that the Data Protection Commissioner believes that the processing currently being done by the registries is being done for medical purposes. The commissioner was kind enough to copy to the Home Office and to the Department of Health her letter of 15th November to the noble Lord which makes that point. Disclosure of personal data for such purposes is provided for by Schedule 3 to the 1998 Act. There is therefore no need for a change in that Act. The noble Lord may consider, despite the commissioner's views, that that is still to be tested and that legislation will put it beyond doubt.

The Government take the same view of the law on that point as the commissioner, but I can repeat the assurances I gave a few moments ago. In the unlikely event that our interpretation of the law is wrong, the Government stand ready to consider with the noble Lord and his advisers what actions may be necessary to secure the future of cancer registration or public health work. The Act allows additional "gateways" for the processing, including disclosure, of medical data to be provided by subordinate legislation. If it is necessary--for the reasons I gave neither the

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Government nor the commissioner believe it is--we will introduce amending secondary legislation to address the concerns.

The point was also clearly made by the noble Lord in regard to common law confidentiality. We believe that the General Medical Council's advice that doctors should disclose sensitive personal data only with consent reflects its understanding of the common law duty of confidence rather than any concerns about the 1998 Act. It is said that the law of confidence requires patients to consent to the disclosure of their personal data unless there is an overriding public interest. The Department of Health is aware of the concerns raised from medical research, including the activities of cancer registries and also in relation to the public health. If there is evidence that the common law duty of confidence might put continuing medical research or public health activity at risk, the Department of Health made it clear that it will look to see what can be done without the need for legislation. But if that is not possible, it will be prepared to introduce legislation at the earliest possible opportunity to address those concerns.

I hope that in the light of those assurances the noble Lord, Lord Clement-Jones, will feel able to withdraw his amendment.


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