---

Baroness O'Cathain: My Lords, I rise reluctantly and briefly to support the regulations. I am reluctant to support the regulations because I have huge respect and admiration for the work and total integrity of my noble friend Lord Howe. Moreover, the debate has revealed the enormous professional knowledge of noble Lords who have spoken. I shall speak not so much as a rank outsider, but as someone who, like everyone else, is involved in health issues.

I believe that we are in danger of addressing this overall issue from the outlook of the 1950s and 1960s. Way back then, people were utterly reluctant even to mention the fact that they had TB in the family because it was regarded as a disease born of poverty, unsanitary conditions and bad nutrition. Similarly, cancer was rarely mentioned in the 1970s; it was the big C. My own mother contracted cancer in 1970 and, to her dying day in 1977, never acknowledged the fact. However, the world has moved on a little. I know from personal experience that those suffering from diseases

21 May 2002 : Column 743

such as TB, cancer and stroke wish more than anything to share information with others so that others may benefit from their experience and from potentially helpful research. They also want to help in the search for a remedy to the disease afflicting them.

Anecdotally, I am one of those who is in the very fortunate position of being the only family member not, so far, to have been struck by cancer. After having four primary cancers in five years, my sister rather wryly said, "Detta, perhaps you ought to go and be tested for the Li-Fraumeni Syndrome which obviously is genetic in our family". I asked what good that would do me. Would I commit hari kari and take my own life, or get into a total depression? I was struck by my sister saying that she wanted people to know about her situation. The more people who know about the effects of the disease the better.

Closer to home was my late husband who suffered a massive stroke about 13 years ago and who died last year. I know that had he been able to contribute to the knowledge—sadly, he could not as he was unable to speak since the stroke happened—he would have been in the forefront of allowing any data about his condition to be made known, so that research could benefit.

We have tried to develop our intellectual attitude from the time when my mother would not say the word "cancer" through to the rest of my family. As I said, my remarks are very personal and anecdotal.

This is not declaring an interest, but I am chairman of our local surgery support group, which has nothing to do with supporting patients, but which is intended to support doctors so that they can assess the facilities available to enable them to conduct their business. I have not consulted them on this because I have come to the debate with my eyes, ears and mind open. They would be at the forefront in saying that we must do whatever we can do to advance the knowledge of those diseases and how they affect people genetically, in clusters, because of lifestyle, or whatever, and that we must give that information to the research bodies.

I declare an interest that I have been involved with the Imperial Cancer Research Fund, which is now subsumed into the new organisation, Cancer Research UK, which is headed by the noble Baroness, Lady Hayman. I am willing that organisation and anyone involved in it to succeed. We are becoming much more open.

Those of us who are not suffering from cancer at the moment, although I know that there are Members of this House who have done so, would be much more open. We would say, "I don't mind my medical record being available, but I am not too sure that I want it named". That is the issue. We should keep names from the information. There was a question earlier about postcodes, which are unnecessary. If local GPs and consultants can verify that there is a certain number of cases of prostate cancer, strokes, TB, and so on, that will help the people doing the research in the relevant agencies.

21 May 2002 : Column 744

I support the regulations and I am sorry to tell my noble friend that I cannot support his amendment.

Lord Rea: My Lords, I believe that the regulations should be passed as they stand, benign though the amendment moved by the noble Earl, Lord Howe, appears to be, as always. Your Lordships will remember the debates that we had on what have became Sections 60 and 61 of the Health and Social Care Act 2001 as the previous Parliament drew to a close.

The role of the of the Patient Information Advisory Group, or PIAG as it is now called, created by that Act is vital. Section 61 states that

"the Secretary of State shall seek and have regard to the views of the Advisory Group".

We have already heard that in three out of five cases, the Secretary of State has listened to its views and has not allowed certain projects to go ahead. Other noble Lords, especially my noble friend Lord Turnberg, and the noble Baroness, Lady Finlay, described the need for patient information for cancer registration and for monitoring and controlling infectious diseases. The amendment would allow data to be used for those purposes, but, if it were carried, all other use of patient information for research would become largely unobtainable, even if it had the approval of PIAG.

The United Kingdom has an outstanding pioneering record in epidemiology, which depends largely on having the kind of patient information that would be permitted by the regulations, but denied by the amendment.

Earl Howe: My Lords, the point of that part of the amendment is that patient consent should be sought if such research were in prospect. It is not to deny research; but patients should consent to personal and identifiable information being disclosed.

Lord Rea: My Lords, my noble friend Lord Turnberg explained how much information cannot be obtained because the patient may have died or moved to an unobtainable or unknown address. Information about them may still be vital to the completion of research. Much of that research, for instance, is now available from the reports of the Registrar General and/or the Office for National Statistics. I refer to mortality and morbidity data which provide such details as place of residence—we have discussed whether that should be a house address or a postcode—social status and occupation at the time of death or of the episode of illness of the patient concerned. If the regulations are rejected, some data collected in general practice and in other specific surveys would become unlawful to collect and use.

Epidemiology started as a tool for identifying and controlling infectious disease. It is now a vital method of determining the association of the chronic non-infectious diseases, which cause the majority of deaths and the greatest burden of morbidity in the community—I am talking about heart disease, stroke, diabetes and hypertension—with other variables which may be important in their causation, for

21 May 2002 : Column 745

instance, their relation to smoking, social class and other factors such as residence and type of housing or district. Such associations increase our understanding of the aetiology of those diseases and their prevention. If the regulations are rejected, the record linkage mechanism first set up by Professor Donald Acheson in Oxford (which is vital in this kind of research) will be endangered.

The professor of cardiovascular epidemiology at St George's, Peter Whincop, says (in a letter to me):

"Without satisfactory implementation of the regulations most epidemiological research of the sort that has been so beneficial in the past will become increasingly difficult or impossible".

I understand that my college, the Royal College of General Practitioners, opposes the regulations. I can understand that because the college may feel that the role of the general practitioner is to be the guardian of individual patients' rights and confidentiality. However, I have the advantage, which I think that the chairman of council of the Royal College of General Practitioners does not have, of having worked both as an epidemiologist and as a GP. I submit that the gain to patients as a whole by continuing the research that the regulations will allow far outweighs any theoretical advantage which might be gained by individual patients by rejecting the regulations or by accepting the amendment.

9.15 p.m.

Earl Russell: My Lords, I do not think that I shall surprise the Minister if I say that the Patient Information Advisory Group is of considerable importance to these Benches. The idea was based on the model of the Social Security Advisory Committee. That is something which I do know something about.

There are several essential qualities about the Social Security Advisory Committee. The first is its professional integrity and independence. I think we all agree that the Patient Information Advisory Group has cleared that hurdle with flying colours, to the universal applause, I believe, of all those concerned.

The other conditions concern the way in which the Government handle that body. The important matters as regards the Social Security Advisory Committee are, first, that all proposed regulations in the area that its remit covers are laid before it for consideration and consultation before they are laid before the House. The second is that its comments are submitted to the Secretary of State and that the regulations, if they appear, are published with the Social Security Advisory Committee's report and the Secretary of State's reply to it so that when we go into the Printed Paper Office, when a social security regulation within the relevant area is to be considered, we can pick up in one handful the regulation, the advisory committee's comments and the Secretary of State's reply.

That is what we understand by publication. Publication means that you have to be able to get it in the PPO. Publication on a website is really not good enough, first, because certain noble Lords—I am perfectly proud to confess that I am one—are incapable of getting access to anything on a website,

21 May 2002 : Column 746

and, secondly, when something is published on a website, so far as I know, there is no means of discovering that publication has taken place.

I shall listen to the Minister's reply on precisely those points very carefully. It was said when the bishops were turned out of this House that they that hated the bishops hated them worse than the devil and that they that loved them loved them not so well as their dinner. I am more interested in the Minister's reply than I am in my dinner.

---