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Lord Turnberg: On Second Reading I said that I found this clause difficult to understand. I think that I understand it better now, but I do not think that I find it any easier. Certainly an enormous amount of heat and anxiety has been generated. The noble Earl, Lord Howe, and the noble Lord, Lord Walton, have expressed some of those anxieties well. However, as regards the assertion that the vast majority of the medical profession are completely against the measure, I doubt whether that is absolutely true. That is certainly not true of the Royal College of Paediatrics and Child Health. It does not seem to be true of the Royal College of Physicians. It is not true of the Academy of Medical Sciences. It is not true of the clinical professors of medicine. I do not even think that it is true of all members of the General Medical Council. I do not think that they have had an opportunity to study it properly yet.
We have discussed two types of patient data: that which is identifiable to given patients and that which is not. They are not terribly well distinguished in the clause. Data to which names cannot possibly be attached are used, and will continue to be used, for research and public health purposes. They do not come under the Data Protection Act or, I believe, under the GMC guidelines.
While the common law allows the use of non-identifiable data, there is the prospect, I suppose, that the GMC could theoretically interpret that differently. Certainly research ethics committees could easily become confused and interpret the clause to mean that even anonymised data should not be used for research purposes. I should like to see that matter not necessarily on the face of the Bill but at least clearly affirmed in regulations or guidance so that that confusion is removed.
As regards data from patients who are identifiable and from whom consent has not been obtained--that is a particular concern--that is now constrained and after the end of October this year will be very much further constrained so that it will not be feasible. The Data Protection Registrar and the GMC will at that time make the use of such data absolutely impossible unless, of course, the second part of the clause is enacted which would allow the use of such data without informed consent in very defined circumstances for very specific purposes with certain safeguards. Of course, everyone believes that consent should be obtained in every instance wherever that is possible. That is absolutely vital; it is the baseline from which everyone begins. But it may not always be possible. Under those circumstances it is helpful to have a measure such as Clause 67.
There are many examples. Let me give a few: first, the Gulf War syndrome. To establish whether soldiers who had been to the Gulf had an increased incidence of cancers of various types, one would need to determine the rate of cancer in those Gulf War veterans and compare it with the incidence in a comparable group of soldiers of a similar age who had not been to the Gulf. It turns out, incidentally, that the incidence of cancer is more or less the same, but it would not be possible to know that without being able to look back at people who could not possibly have given their consent when they developed cancer.
Similarly, the Public Health Laboratory Service would not have been able to conduct the study into the relationship between autism and the measles, mumps and rubella vaccination. It did find that there was no relationship between the two; that one does not seem to be causal of the other. Therefore, we would not have been able to determine that without the opportunity to look back at data on MMR and autism.
The determination of the relationship between a rare occurrence of a disease and immunisation--a question that constantly arises--depends on one's ability to look back. Patients could not have given consent about their disease when they got it because at that time the idea that it might be related to immunisation had not even been thought of. If you want to know the relationship between cancer and environmental factors, or the source of an e-coli 0157 or Legionella outbreak, you must use named patient data.
Professor David Barker in Southampton undertook a marvellous research programme into the relationship between the level of nutrition of an unborn child in the womb and diseases that may be acquired in later life. He demonstrated, for example, that the birth weight of an individual may, 50 or 60 years later, determine that person's incidence of high blood pressure, diabetes, heart attack, and the like; and it was dependent on obtaining data about named patients, where consent at birth could not possibly have been given. How poor we would be without that type of research which could not be done.
I, too, have struggled to find a mechanism that might achieve those laudable aims. Unlike the noble Lord, Lord Walton, I have not been able to come up with anything better than legislation of the type envisaged by this clause. I know that giving the Secretary of State powers of this kind is likely to send shivers up and down the spines of many people, but I believe that the proposed controls are pretty stringent as they stand and as promised.
My fear is not that they will have the potential to betray patients' confidences but that they are so draconian that the mechanism itself will inhibit the very research that the clause is intended to allow. It involves advice from an expert committee and a three-month public consultation, and it then has to pass through both Houses of Parliament. We could not need more to protect patients' confidentiality, especially as they cannot possibly be harmed by the sort of things to which I have referred, and only they and the public can gain.
I hope that the Minister will be able to reassure us that the mechanisms involved will be carefully considered, not only from the point of view of the patients but also from the point of view of the public good.
Baroness Cumberlege: I support my noble friend and speak to the amendments standing in my name, which cover both issues in this clause. I was very interested to hear what was said by the noble Lord, Lord Turnberg, and the noble Lord, Lord Walton of Detchant. From the Minister's point of view, there can be nothing more ghastly than being caught between two warring professors, two noble Lords who have different views.
This issue was first brought to my attention when I read a letter in The Times of 7th February--before the Bill went to the other place--expressing grave concerns about this clause. It was signed by Donald Irvine, President of the General Medical Council, Ian Bogle, Chairman of the Council of British Medical Association, Robert Boyd, Chairman of the UK Council of Heads of Medical Schools, Denis Pereira Gray, Chairman of the Academy of Medical Royal Colleges, and James Johnson, Chairman of the Joint Consultants Committee. I know each of those individuals. They are not men of straw. They have each held huge responsibility in the medical profession, leading very important parts of it. Many of them are erudite academics and researchers in their own right. They have expressed great concern about the clause.
Going back to the comments of the noble Lord, Lord Walton of Detchant, we are greatly concerned that the clause will fundamentally change the trust and confidence that patients have with their doctors. I understood the comments of the noble Lord, Lord Turnberg, about secondary research, but is he saying that on certain occasions consent is not required? What about the Alder Hey case? That has caused great distress and concern among parents about the spare parts of their children. Everybody agrees that those issues should be addressed and that consent should be required.
My main concern relates to people with HIV and AIDS. I am a vice-chair of the All-Party AIDS Group. In this country we have 43,834 people with HIV and AIDS. That is a lot of people. Very recently, the all-party group held a series of hearings with people with HIV and AIDS. One of the things that came across strongly--and quite surprisingly--was how much discrimination is still alive and well. We heard of a Durham store manager who had been sacked by Aldi because the company had discovered that he had HIV.
There are lots of cases like that. HIV and AIDS are not notifiable diseases. We are encouraging sufferers to get access to testing and treatment in the name of public health. I wonder what they will feel knowing that if their confidence is in any way broken they may well lose their job or their mortgage. They are frequently discriminated against and they very often lose their housing. There are huge dangers in the clause. Like my noble friend, I should like it to be struck out of the Bill.
One reason why there was so much anger when the clause was produced is that there was no forewarning of it. The provisions were not in the NHS Plan. They were suddenly sprung on all of us with no consultation. People were deeply concerned that there were hidden motives.
I have heard a lot of good evidence from the pharmaceutical industry--individual companies as well as the ABPI. I shall not go into that tonight, because the noble Lord, Lord Walton, has dealt with the issue eloquently and thoroughly. However, I find it odd that the Government are seeking to increase the regulation imposed on that industry. It is a successful industry that we should be proud of. The Government are being schizophrenic. They say that they want to encourage it and keep it in this country--we know that many companies are going abroad for their production as well as for the development of their products--yet they are trying to regulate it further. The Prime Minister's competitiveness task force is looking at the issue and will report in a few weeks. It would be right to wait for that report.
Finally, I want to say a little about the House of Lords Select Committee on Delegated Powers and Deregulation. Many reports have come before the House, but I have never read one which has been so damning and which has taken apart to such an extent what is being proposed in this clause. The report goes through the lack of consultation on the draft regulations, the extraordinary claims that are made for regulation, the width of the powers, the affirmative resolution procedure, and the extent of the representations that were made.
I believe that Ministers should be quite ashamed to read a report such as that on proposed legislation. Certainly there has never been one so damning. I believe that a huge amount of evidence is coming forward from all quarters that the Government should take away this clause and think again.
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