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House of Lords

Monday, 16th July 2001.

The House met at half-past two of the clock: The LORD CHANCELLOR on the Woolsack.

Prayers--Read by the Lord Bishop of Bath and Wells.

Medical Research: Data Protection Legislation

Lord Campbell of Croy asked Her Majesty's Government:

    Whether they will amend any sections of the Data Protection Act 1998 which restrict or inhibit medical research likely to save lives.

The Lord Chancellor (Lord Irvine of Lairg): My Lords, earlier this year there was a concern in the medical research community about the effect of the 1998 Act on medical research. An article in The Times of 15th May, which I believe the noble Lord has read, reflected that concern. However, the concern was misplaced. The problem for medical research did not arise out of the 1998 Act but from the common law of confidence which prevents a doctor passing information about his patients to a research organisation without their consent, unless--and there is uncertainty about the extent of the protection given by this qualification--disclosure can be shown to be in the public interest.

The real issue, patient confidence, has been addressed by the Government in Section 60 of the Health and Social Care Act 2001. This allows the Secretary of State to make regulations authorising or requiring the disclosure of patient information for medical purposes, including research, so overriding any duty of confidence. Section 60 was supported by Sir Richard Doll and Sir Richard Peto of the Nuffield Department of Clinical Medicine at Oxford.

Lord Campbell of Croy: My Lords, I thank the noble and learned Lord for his reply. I am pleased that he saw the alarming report in The Times about research being delayed because of fears of prosecution if information about individuals was made public or passed to third parties. It included a quotation from a professor that the law is killing people. Can the noble and learned Lord give an assurance that the legislation cannot be misread in that way? Furthermore, is he aware of the concern that if the data collection was originally prepared for one purpose it may not be legally released for another purpose?

The Lord Chancellor: My Lords, I cannot give an assurance that any piece of legislation will not be misread, but I have given an assurance that the Data Protection Act does not have the implication contended for. The Information Commissioner has a role in this regard which may be of interest to your

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Lordships. She has given considerable thought to the impact of the Act on medical research and she has recently issued for publication a most helpful document containing draft guidance on the use and disclosure of medical data. She has asked for comments by the end of August.

My officials will be more than happy to provide noble Lords interested in this matter with copies of the document in order to assist them to offer their views to the Information Commissioner.

Baroness Andrews: My Lords, can the noble and learned Lord tell me when the Patient Information Advisory Group, which is intended to advise on the regulations, will be set up?

The Lord Chancellor: My Lords, the Patient Information Advisory Group must be set up by regulations under Section 61 of the Health and Social Care Act 2001, to which I have referred. Draft regulations establishing it are about to be presented to Ministers, together with proposals for its membership. It is hoped that the first meeting of the group will take place as early as possible in the autumn.

Lord Clement-Jones: My Lords, is the noble and learned Lord aware that those responsible for the disease registries in particular are concerned about the timetable because of the GMC guidelines on personal information which come into effect in October? Therefore, it is extremely important that the Patient Information Advisory Group is set up well before then in order to allow the regulations under Section 60 to be approved. What assurances can the noble and learned Lord give to that effect?

The Lord Chancellor: My Lords, I believe that the route through all the problems lies in the power of the Secretary of State to make regulations authorising or requiring the disclosure of patient information, so overriding any duty of competence.

The Secretary of State's proposals must be considered by the new statutory body, the Patient Information Advisory Group to be set up under Section 61, and the views of that body must be published. The regulations must then be approved by affirmative resolution of both Houses and each use of the power must be reviewed annually. That will therefore take a little time, but I agree with the noble Lord that the matter is somewhat urgent.

Lord Campbell of Alloway: My Lords, I am afraid that I am terribly confused. I try to listen carefully to what the noble and learned Lord says, but surely it is no longer merely a question of regulations by the Secretary of State. Must we not consider Article 8.1 of the convention relating to the right to the protection of private and family matters? Is it right now that confidential information, be it medical or otherwise, given for one purpose cannot be used for another purpose without the consent of those concerned? I ask only because I do not understand.

The Lord Chancellor: My Lords, I readily agree that this area is very complicated. It arises out of the

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common law of confidentiality which obliges doctors not to reveal patient information without consent. On the other hand, there are those who argue that that should be capable of being overridden in limited circumstances for the benefit of medical research, and that is where the Act of 2001 comes in. Further, the Data Protection Act sanctions the use that may be made of patient data, but in a way which I believe to be balanced and sensitive to the privacy of individuals.

Lord Walton of Detchant: My Lords, does the noble and learned Lord agree that for many years the existence of disease registries, particularly in the field of cancer, has played an enormously important role in informing cancer services and the treatment of patients throughout the United Kingdom? Does the Lord Chancellor also agree that it was not until some months ago that the GMC recognised that the passage of information through such registries relating to named individuals might breach the common law provision and made recommendations to the effect that such information should be passed on only with the informed consent of the individual? Can the noble and learned Lord give an assurance that the GMC should be advised not to implement its advice in November of this year as it proposes until the Patient Information Advisory Group set up under the Health and Social Care Bill has had time to report?

The Lord Chancellor: My Lords, I am no longer in the business of giving advice--nor would I consider doing so from this position--to the GMC. However, there is force in what the noble Lord says. This point was raised by the noble Lord, Lord Clement-Jones, at Third Reading and at Report stage of the Freedom of Information Bill. There is undoubted concern on the part of cancer registries that they might be inhibited by the need for all personal data provided by clinicians to those registries to be subject to patient consent or to be wholly anonymised. Therefore, I entirely agree that the problem exists. I believe that the way forward is to carry into effect Sections 60 and 61 of the Health and Social Care Act, which I have already described, and it is for the General Medical Council to decide whether in these circumstances it is wise to hold its horses.

Asylum Seekers: Voucher Scheme Review

2.45 p.m.

Lord Greaves asked Her Majesty's Government:

    Whether they expect to announce the outcome of the review of the asylum seekers voucher scheme before the Summer Recess.

The Minister of State, Home Office (Lord Rooker): My Lords, the accurate and precise answer to the noble Lord's Question is no. As a new ministerial team it will take a while for us to come to our conclusions and, therefore, it is not proposed to make any announcement before the Recess.

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Lord Greaves: My Lords, I thank the Minister for that disappointing Answer. This review was first promised at the Labour Party conference in response to a conference rebellion some nine months ago. On 13th November 2000 the then Minister, the noble Lord, Lord Bassam of Brighton, in reply to a Question for Written Answer tabled by the noble Lord, Lord Hylton, said:

    "It is hoped to complete the review early next year".--[Official Report, 13/11/00; col. WA 7.]

Can the Minister tell us the reasons for this extraordinary and disgraceful delay? Is it departmental incompetence, ministerial indecision, whether on the part of old or new Ministers, or pure political cowardice?

Lord Rooker: My Lords, we do not propose to make any announcement before the Recess, and it would be futile to go beyond that during the course of this exchange.

Lord Judd: My Lords, while my noble friend's Answer is refreshing in its candour, does he agree that there are many people working at the front line with asylum seekers and immigrants who believe that the stigma and humiliation involved in the scheme outweigh any possible benefits and that the sooner it can be revised the better?

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