Thursday, 13 March 1997
Seanad Éireann Debate
Minister for Health (Mr. Noonan,: Limerick East): I am pleased to introduce the Health (Provision of Information) Bill, 1997, to Seanad Éireann. It is a critical part of the action plan on the implementation of the national cancer strategy which I announced last week.
The purpose of the Bill is twofold. It is designed to ensure that we can proceed with the establishment of national programmes of screening for breast cancer and cervical cancer and that the National Cancer Registry Board can continue to collect important data on cancer in Ireland. In both cases, my concern is to ensure that we comply with all legal requirements relating to data protection.
On 4 March 1997, I announced a major action plan containing full details of how the national cancer strategy would be implemented. I published the strategy last November. Last week's action plan gave details by region of how the many initiatives in the strategy would be funded and put into practice.
The main elements of the national cancer strategy involve reorganising cancer treatment services to promote a strong patient focus and ensure equity of access throughout the country, devoting resources to screening and early detection programmes of proven value, using health promotion activities to emphasise further the importance of healthy lifestyles, developing specialist palliative care services on a phased basis and facilitating greater co-ordination of cancer research.
The action plan which I announced on 4 March describes how the strategy will be implemented. The main elements include plans costing an extra £6 million this year for the development of cancer services in each region. The plans include additional consultant appointments for treatment services, development of palliative care and funding for research, the appointment of regional directors to co-ordinate services and develop a  cancer plan for their region — further funds will be allocated in 1998 and 1999 to implement all of the provisions of the strategy; the appointment of a National Cancer Forum as promised in the national cancer strategy; the establishment of expert bodies to steer the implementation of national programmes of screening for breast cancer and cervical cancer and the introduction of legislation to ensure that the breast and cervical screening programmes comply with data protection requirements. Senators will see that the Bill before the House today is an integral part of the initiatives to address the problem of cancer and to implement the national cancer strategy.
Cancer is one of the biggest causes of death in Ireland. It accounts for 7,500 deaths every year, or one quarter of all deaths. In the under-65 age group the proportion is even higher again, at one third of all deaths in this group. We describe deaths among those under 65 years as premature mortality. Many of them can be prevented. With this in mind the national cancer strategy focuses on steps to reduce premature mortality from cancer. The cancer strategy reiterates a key target set in the national health strategy, published in 1994, namely, to reduce the deaths in those aged under 65 years by 15 per cent in the ten year period to 2004.
Of all deaths from cancer in those aged under 65 years, breast cancer accounts for nearly 10 per cent. About 660 women die each year from breast cancer. Cervical cancer accounts for a further 60 to 70 deaths each year. Expert advice is that between 20 and 30 per cent of deaths from breast cancer among women aged over 50 years could be prevented if a quality mass screening programme were established. International studies indicate that programmes should be aimed at women aged between 50 and 64 years. To date, there is little evidence to support breast screening among women under 50 years of age.
In the case of cervical cancer, there is evidence that, where a pre-malignant condition known as CIN is identified, it can be treated with almost 100 per cent success. CIN usually precedes cervical cancer so identifying it before it develops further is very important.
The potential value of screening programmes for breast cancer and cervical cancer lies in their ability to reduce significantly the number of deaths from the disease. Any programmes that we develop must be very carefully organised and based upon the highest quality practices so as to ensure that we get the best results. We are fortunate to have had a very valuable pilot programme of screening for breast cancer, known as the Eccles breast screening programme, since 1989. My Department funded the programme which was organised by the Mater Foundation. The experience of the pilot programme will be very valuable now that we are moving to establish a national programme. The Eccles breast screening programme underlined the importance of organising screening carefully on a phased basis so that  the lessons of each stage can be taken into account before the next phase proceeds.
In the area of screening for cervical cancer, we have the benefit of an expert group whose report I published with the national cancer strategy last November. The report of the working party on cervical screening recommended that a national programme of cervical screening should be established for women in the 25 to 60 age group. I accepted this recommendation and have now established the advisory committee recommended by the expert working party to oversee the implementation and monitoring of a national programme. Again it will be important to run a pilot programme in the first instance to ensure that the national programme operates in the most effective manner.
We are now ready to move to the next stage of preparing national programmes of screening for breast cancer and cervical cancer. However, there is one critical element that must be put in place before we can proceed. We must ensure that the proposed programmes comply with all legislation relating to data protection. That is the principal purpose of the Bill before the House today.
Expert advice is that both programmes must have a population register which can be established and regularly updated. The purpose of the population register is to have the names and addresses of women in the target age group so that they can be invited for screening. The registers will need to be updated constantly so that women can be invited to attend as soon as they reach the appropriate age. The women's details can then be retained on the registers until they move outside the target age group but the first concern is to ensure that we can identify all women who should be offered screening for the first time.
There is no such population register available to us at present. Therefore it will be necessary to draw upon data from a number of existing sources such as the GMS Payments Board, the Department of Social Welfare and health insurance companies. The names and addresses of women must be obtained from these sources and used to create a national population register for the age groups concerned. However, under current data protection legislation it does not appear to be possible for these sources to pass personal details to a third party such as a screening programme. An important principle of data protection is that personal information, such the names and addresses of individuals, should be used only for the purpose for which it was originally collected. There can be little argument that in this case the information is required for a very important purpose, but the legal advice available indicates that we require specific legislative authority to proceed.
Section 1 of the Health (Provision of Information) Bill sets out to confer this legislative authority. It provides that a body participating in any national programme of breast or cervical  screening authorised by the Minister for Health may request information from any person regarding names, addresses and dates of birth so that, for public health reasons, women may be invited to participate in that programme. The section enables any person requested to provide information for this purpose to do so. The important elements to note are that the screening programme must be authorised by the Minister for Health, the information must be requested for the purposes of compiling and maintaining a record of women who may be invited to attend for screening and the purpose of the screening is for reasons of public health.
Senators will notice that the section is enabling rather than mandatory. It does not require any person or agency to provide the information requested but it is expected that all agencies such as the General Medical Services Payments Board and the Department of Social Welfare will be anxious to co-operate fully in such important programmes as screening for cancer. Senators may also note that the cancer screening programmes — and the National Cancer Registry Board with which I will deal in a moment — will be governed by the Data Protection Act in how the information made accessible to them is stored and used.
I understand the issue of prostate cancer screening is of concern to a number of Senators. This issue was considered by the cancer strategy group which advised me on the drafting of the national cancer strategy. The group's view was that current evidence does not support an organised screening programme for prostate cancer. There is medical consensus on the need for large population studies to assess the benefits of screening programmes and a large population study on prostate cancer screening is in progress in the European Union. The results are expected in 1998. The national health screening committee in the United Kingdom has recently concluded there is no evidence available at this time for the introduction of a prostate screening programme.
I have no difficulty, in principle, with the concept of an amendment such as that proposed by Senator Finneran but I emphasise I can give no commitment to a screening programme for prostate cancer unless and until there is adequate medical evidence to support its effectiveness. The wording of any amendment must be carefully drafted and it would be unwise to insert something today without consultation with the Attorney General's Office or the parliamentary draftsman. If it is acceptable to the Seanad, I can have an appropriate amendment prepared in time for the Dáil's consideration of the Bill on 25 March. The amendment would then be resubmitted to the Seanad on 26 March.
The second major element of the Health (Provision of Information) Bill is to enable the National Cancer Registry Board to continue collecting important data on cases of all forms of cancer. The board is a statutory body established in 1991 under the Health (Corporate Bodies)  Act, 1961. Its functions include the collection and analysis of information on each newly diagnosed case of cancer. Its main task is to gather and analyse information on the incidence and relevance of all types of cancer in Ireland. The data it collects are very important for epidemiological and research purposes. The board's work forms a critical part of the initiatives announced in the recently published national cancer strategy. Senators will be interested to note that the board's first national report on cancer is being finalised and will be published soon.
To allow the board to have a complete and detailed picture of cancer in Ireland, the information supplied to it by hospitals must include the name and address of each patient diagnosed. There are a number of reasons for this requirement. First, it is vital for the National Cancer Registry Board to be able to trace patients across episodes of treatment in different hospitals. Its data must be consistent and accurate in this regard. The board's experience and that of cancer registries internationally is that access to the names and addresses of patients is the only reliable method for achieving this cross-matching.
Second, the National Cancer Registry Board also collects data on deaths from cancer. As part of this task, it must update its records on patients diagnosed with cancer who subsequently die. The registry uses information from death certificates for this purpose. Again, both international experience and that of the National Cancer Registry Board is that it is not possible to link cases currently registered with those who die from cancer unless the name and address of the patient is available.
Questions have been asked about whether it is permissible under current data protection legislation for hospitals to supply data of this kind to the board. I am anxious to resolve any questions about this matter so that the National Cancer Registry Board can continue its important work. Failure to resolve the situation now could deprive the board of vital sources of data, its ability to collect accurate information would be greatly hampered and its role in helping analyse the incidence and prevalence of cancer would be severely curtailed. Its contribution to cancer research would also be reduced.
To avoid any possible doubt about the legal basis for the National Cancer Registry Board's current arrangements for obtaining named patient data from hospitals, the Health (Provision of Information) Bill provides that the board may request this data for the purposes of any of its functions. It also provides that the persons requested to supply the data — hospitals — may do so. It is important to note that this provision merely safeguards the present position and does not confer any additional powers on the National Cancer Registry Board. It should also be noted that the Bill enables the board to request and obtain this information specifically for the purposes of any of its functions. These are set out in the National Cancer Registry Board  (Establishment) Order, 1991, and the board would not be permitted to obtain named patient data for any other purpose.
There are no direct implications for staffing or costs as a result of this Bill. The full costs of the programmes of screening for breast cancer and cervical cancer are included in the action plan I announced last week and in the proposals I brought to Government before I published the national cancer strategy last November. As I mentioned earlier, I have allocated an additional £6 million for the development of cancer services in 1997. This includes preparations for establishing the national programmes of screening for breast cancer and cervical cancer. I have also announced that the implementation of the complete set of initiatives on cancer will continue in 1998 and 1999 and that the full package of developments, including the screening programmes, will cost an extra £25 million when all the initiatives are in place. There are no cost implications for the National Cancer Registry Board as a result of the proposal to safeguard its position in relation to collection of data from hospitals.
This Bill is a very important element of the action plan on cancer which I announced on 4 March. It is legislation vital in allowing the programmes of breast screening and cervical screening to proceed. Without it, the programmes cannot go ahead. It is also very important in the context of the National Cancer Registry Board's work.
Mr. Finneran: My party welcomes the legislation. Its purpose is to enable the Minister for Health to proceed with the establishment of a population register for the national breast and cervical cancer screening programmes. It also enables the National Cancer Registry Board to continue collecting important data on all forms of cancer. The legislation is necessary to comply with the Data Protection Act.
I am disappointed this Bill is so restrictive and narrow as to not account of forms of cancer other than breast and cervical cancer. It also seems to concern itself solely with women. I contend the Bill is too restrictive and narrow and has not taken a broad look at the incidence of cancer or at the opportunity now presented to the Minister and the Department to put in place proper screening programmes. This legislation was drafted to meet with the requirements of the Data Protection Act but not enough thought has been put into it. It deals with breast cancer for women but no mention is made of the fact that breast cancer also happens to men. It is neither mentioned nor catered for in the legislation.
Prostate cancer is a matter of great national and international debate. As the Minister said, a major European Union study is taking place on it and many studies are being undertaken in the United States on this form of cancer. I cannot see why the Minister and the Department did not provide for the gathering of information on such  a distressful, dangerous and sometimes fatal cancer. The Minister should reconsider his position on this matter. He should include screening for and information on prostate cancer and other forms of cancer in this Bill.
I welcome the fact that the Bill is being initiated in the Seanad, but more thought and a broader outlook should have accompanied it. There is much debate on breast and cervical cancer. It is important that the Oireachtas reflect that debate and implement legislation to help reduce the incidence of those diseases so as to protect Irishwomen. Apart from the physical aspect, women face psychological pressure when suffering cancer and any legislation that enables the Department of Health or the National Cancer Registry Board to alleviate any distress, reduce the incidence or help the treatment of cancer is to be welcomed. The Minister has my full support in that area, but I am unhappy with his approach regarding this legislation because it excludes 50 per cent of the population.
Why did his advisers and draftspeople not consider other cancers, particularly prostate cancer, which is very distressful? I do not have the figures — the Department would be in a better position to supply those — but more and more cases of prostate cancer are coming to light. It has been suggested to me that there is often evidence of prostate cancer in post mortems on elderly males. It is important to allow the Minister, a successor or an appropriate agency to implement a screening programme on prostate cancer, if they wish, with the help of provisions in this legislation. Such provisions are not in the legislation as it is currently framed and that is a major defect. Other Senators may identify different cancers or diseases that might be included, but legislation that reflects the needs of 50 per cent of the population has to be defective. This legislation was not fully considered while it was being prepared.
I welcome the Minister's decision and statements on the Cancer Action Plan, especially its regional application. There is to be a regional director in, presumably, each health board area. An announcement was made about a regional director of cancer services in the Western Health Board area, as well as an additional haematologist and additional medical oncologist. That is welcome, but can the Minister say whether any of the money earmarked for this Cancer Action Plan has been clawed back to implement the nurses' pay deal? Recently all sections of the Department have had to cut existing plans and budgets to implement that pay deal. The Minister should be able to inform us that there are no cuts to the Cancer Action Plan.
I have tabled an amendment on Committee Stage on this matter because the legislation is incomplete in that it is too restrictive and excludes both people and other forms of cancer. I welcome the Minister's intention to have the Attorney General give his views on this. A statement in this House to the effect that something  will happen in the other House is not an appropriate way to debate legislation. This House has the right to debate, amend and pass legislation in its own right. If we did not work on that basis we would not be carrying out our duties as elected Members of the Oireachtas. If the Attorney General or draftspeople wish to examine my amendment, that should be done; but it should not be done after we have passed legislation with a caveat. That indicates something may or may not happen in the Dáil and would be dismissive of this House's commitment to legislation, especially as the legislation has been initiated here. It would be saying that a change in this legislation may be needed but it cannot be done in the Seanad and that it will be done in the Dáil. When the Constitution set up two Houses of the Oireachtas, that was not the way business was supposed to be carried out and it is unacceptable to me.
Mr. Doyle: The Health (Provision of Information) Bill, 1997, is one of the shortest Bills to come before the Oireachtas in my 15 years here but it is one of the most important. The purpose of this Bill is to enable the Minister for Health to proceed with the establishment of population registers for national programmes of screening for breast cancer and for cervical cancer. The Bill also enables the National Cancer Registry Board to continue collecting important data in relation to cases of all forms of cancer.
Cancer is the second leading cause of mortality in Europe and accounts for about one quarter of all the deaths. In the EU alone there are approximately 1.3 million new cases of cancer every year and more than 840,000 deaths from the disease. The number of new cases occurring each year is rising and it is anticipated that overall mortality in the EU will increase over the next 15 years in the absence of effective strategies for the prevention and treatment of cancer.
Ireland's mortality from cancer compares unfavourably with that of the EU average. While our death rate from cancer has declined by almost 10 per cent in the under 65 age group since 1970, it is still above the EU average. The mortality rate for the overall population has risen slightly since the 1970s. The overall rise in cancer mortality is due in part to the fact that our population is ageing. Any increase in deaths from cancer should be addressed by all the measures available to the State.
The main objectives of cancer strategy outlined in Shaping a Healthier Future were based on the principles of preventing cancers for which a cause is known or suspected, providing information to increase awareness and improve knowledge of the cause of cancers, early detection in providing screening services of proven value in prevention and early detection of cancer, ensuring all patients have access to an equitable and effective service and ensuring treatments are provided  appropriately and administered safely in accordance with established best practices.
On 4 March 1997, the Minister for Health announced a major action plan to initiate the proposals contained in the national cancer strategy and outlined the major elements of the action plan. One of the major elements of the plan is the establishment of national screening programmes for breast and cervical cancers. I note from the document, A Cancer Service in Ireland — A National Strategy, that the incidence of breast cancer in Ireland is among the highest in Europe with over 1,200 cases diagnosed each year.
As the causes of breast cancer remain to be established, it is not known how it can be prevented. Therefore, it is important that emphasis is placed on detection at the earliest possible stage. I am pleased to note that in the Eastern Health Board area, the Minister has appointed two regional directors and the introduction of a programme for breast screening will form part of the national programme for women aged between 50 and 65 years. This will also involve expanding the Eccles breast screening programme at a cost of £1.5 million per year. In addition, consultant radiologists will be appointed to the Mater Hospital breast screening programme and the premises at Eccles Street will be refurbished at a cost of £300,000 to provide the headquarters of the national programme.
The Minister has also announced his intention of establishing a national programme for the screening of cervical cancer which accounted for 61 deaths and more than 1 per cent of all cancer deaths in 1994. Although, it is more common in older women, approximately 60 per cent of deaths from cervical cancer in 1994 occurred in women under 65 years. The exact cause of cervical cancer is unknown, nevertheless, early screening of the disease and treatment can help to eradicate the problem. I am pleased the Minister is providing £1 million to enhance cervical screening services in six major hospitals in the Eastern Health Board area.
The National Cancer Registry Board is a statutory body established to gather and analyse information on the incidence and prevalence of cancer in Ireland. It is vital that the registry can trace patients across episodes of treatment in different hospitals and that the data are consistent and accurate. Names and addresses of patients will be required for this purpose. It has been argued that the gathering of such information would be in conflict with the Data Protection Act, 1988. For that reason, the Bill provides that the gathering of such information be exempted from the Act.
While I welcome the Minister's commitment since taking office to set up effective cancer treatment services, nevertheless, I, as a male Member of the House, share some of the anxiety expressed by Senator Finneran. Quite a number of men die from prostate cancer and some attention should be given to the problem. The Minister said a medical consensus would require large population studies before the benefits of screening  could be evaluated. These are being conducted in the EU and will be available in 1998. There are also some screening tests being conducted in the UK at present.
The Minister said he has no difficulty in principle in accepting an amendment which would provide for the screening of prostatic cancers. The main priority in dealing with cancer is to detect it as soon as possible. Screening is valuable in this area. If screening had been used in many cases, lives could have been saved. I ask Senator Finneran to bear in mind that the Minister said he has no difficulty in principle in accepting his proposed amendment. Nevertheless, he will not give a commitment to a screening programme unless there is adequate medical evidence to support its effectiveness, which is fair. We are lay people and we must rely on the medical evidence available.
The Minister said the wording of the amendment would have to be exact. He has asked that the Attorney General's Office and the parliamentary draftsman see the amendment prior to it going before the Dáil and it would then come back to the Seanad. He is not ruling out another contribution from this House. This Chamber is not being overlooked. It is acknowledged that the matter was initially raised here. Many amendments proposed here may not be accepted but the Minister picks them up in his speech to the House. He often attends to these matters when a Bill goes before the Dáil and vice versa. We should accept the offer the Minister made today.
We all fear cancer. When we get a sore throat or a pain, cancer may be our first thought. Every household in Ireland has some family member who has died from cancer. My father died in his forties, when I was six years old and I dread the problem. I congratulate the Minister for emphasising the establishment of effective treatment for cancer. The service he is providing will help prevent the spread of cancer. He has also provided the action plan, at a cost of over £6 million, for the development of cancer services in each region of the State. The Minister should be complimented on this. He has the support of the vast majority of the people in what he is doing.
Dr. Henry: I have a proprietorial interest in this Bill. When I entered the House, the first Adjournment matter I raised was on whether a population register could be set up for the screening of breast and cervical cancers.
Like Senator Finneran and Senator Doyle, I am disappointed that the legal advice is that the matter has to be this specific. So many cancers can be screened for, not just prostatic cancer. There are other health areas where screening at the same time would be useful. For example, breast cancer is the most common cause of premature death of women in this country. However, coronary artery disease is almost as common. It would be tremendous if we were in a position to screen women for high blood pressure and diabetes  at the same time as breast cancer. Late onset diabetes has become much more common.
I do not know if the Minister's legal advisers will let him include these possibilities under related matters, but it would be helpful if as much as possible could be done at the time of screening. It is a great opportunity to have patients come forward to be screened. They could also be offered the possibility of having their blood pressure taken and their urine tested. Such simple tests could show if they had anaemia or related blood problems. If this could be done under related matters it would be clinically significant for women's health. That is the disappointing aspect of the Bill. We had hoped that one would be able to set up a register which did not have to be so tight. However, if the Minister has been given that legal advice, I can do nothing about it. I am not a lawyer and cannot advise on that area.
I am delighted the national cancer register has been set up. Will the Minister reassure me that it is linked with the register in Northern Ireland? This is incredibly important. The Institute of Public Health has been set up, for which I congratulate the Minister and his predecessor. I compliment my colleagues in the Royal College of Physicians, who were instrumental in pushing this project, the Irish Department of Health and the Department of Health and Social Services in Northern Ireland.
Any epidemiological work carried out on a base of five million people will be more accurate and effective than two pieces of such work based on 1.5 million and 3.5 million people. The more epidemiological surveys we can tie in with Northern Ireland, the better. However separate people in Northern Ireland might consider themselves to be, they might learn to their dismay that genetically we are the same. We have the same blood lines and genetic basis because the people of Ireland were pushed towards the edge of Europe, as were people in Scotland, Iceland and Scandinavia. It is important, from an epidemiological point of view, that we try to get as much information as possible in this area.
To date, screening in this country has largely taken place on an opportunistic basis. While it is useful for the individual, it is of little value in lowering the premature mortality which screening is attempting to address. It has long been sought and its introduction is most welcome. I understand the concerns of male Members of the House — Senator Honan and I care for men's health as much as for women's health — regarding prostate screening. This is a difficult matter because the jury is still out with regard to whether it is better to carry out prostate specific antigen testing or transrectal ultrasound to get a better idea of whether a man has early cancer of the prostate.
When looking at instances of cancer of the prostate it is important to remember that a large number of them are discovered at post mortem when the person has died from another cause. However, there is a worry that there might be an  increased incidence in early cancer of the prostate and the natural history of this disease is not well understood. I understand the concern of male Senators but the delay is probably right. There is no use screening unless it is decided from the start how the screening will be carried out. As it has not been developed sufficiently yet, that is important.
I caution the Minister against constantly referring to the United Kingdom. I have nothing against my colleagues in the United Kingdom; they do fine research work. However, I am sometimes less that enthusiastic about the Minister for Health in London. Health economics can have a great deal of influence on some of the projects carried out. I remind the Minister of our unpleasant experience in 1991 when the Department of Health decided to delay screening for hepatitis C because the UK was delaying such screening. I will remember to my dying day the shock I received at the hepatitis C tribunal when the letter to the chief medical officer of the Department of Health was read to the tribunal. In that letter a senior medical officer of the Department of Health in England said the English Department was delaying introducing screening for hepatitis C because of the Gulf War. Our Department delayed the screening as well. We can only be grateful that Saddam Hussein did not last any longer.
We should be extraordinarily careful about thinking we are a type of offshoot of the United Kingdom. I have seen it happen too often and I am most anxious about it. We should keep an eye on what is happening in Scandinavian countries and in other small countries like Ireland which go to such trouble to introduce screening programmes. Screening programmes will probably be introduced late in the United States because it would be a major undertaking. It will probably be introduced by private healthcare institutions as they are keen on managed healthcare.
The Minister will support an initiative to co-ordinate and develop clinical research through the establishment of a Cancer Clinical Research Unit within the Health Research Board. Its purpose will be to provide a multi-disciplinary, multi-institutional approach to clinical research in a way that benefits patients to best effect.
That is good, but what efforts have been made to support research at a molecular level? It has been known in medicine for many years that we inherit our chromosomes or DNA almost equally from both parents. If these chromosomes or DNA are deficient in some way, it may lead to diseases of a genetic nature which may in many cases be familiar or common to many members of the same family. A good example of this type of disease is haemophilia. However, there are other diseases which can be traced in a family where the genetic  defect may be pinpointed. These are referred to as inherited disorders.
It is now agreed that the vast majority, if not all, forms of cancer are acquired genetic diseases. Individuals are born with normal genes, chromosomes and DNA; but some event, probably environmental in origin, changes the genetic structure of some of the cells. The result is that cell multiplication and function become abnormal leading to a state we call “cancer” and ultimately in many cases to the patient's death. The reason we know this stems primarily from research in the area of blood diseases, blood cancers and leukaemias. We have known for many years that some leukaemias were always associated with specific abnormalities of chromosomes. It is only with more sophisticated diagnostic techniques that we now know all leukaemias are associated with specific abnormal chromosomes.
As a result of the relative ease in obtaining specimens of leukaemia cells, these observations have preceded those made by specialists in the treatment and diagnosis of other forms of cancer. However, it is now clear that in the majority of other cancers that have been studied, there are also acquired genetic defects. This is important. First, it gives us an understanding of the mechanism whereby cancer cells grow abnormally, and this is leading to a radical rethink in the type of treatment we might offer patients with cancer in an effort to cure their disease. Second, the fact that there are specific genetic defects in different types of cancer allows us to make an accurate diagnosis. These genetic markers also serve a useful purpose when we try to examine patients to see if their tumours are truly cured.
At a recent conference in Edinburgh, experts from Europe and North America clearly stated that the only test which offers any prognostic significance in leukaemia, both in children and adults, is the definition of the type of genetic abnormality. All other tests are of much less significance in terms of the patient's outcome. It has also been agreed by those experts that the type of treatment given in children and adults with leukaemia and related diseases should be, and currently is, stratified and based on the type of genetic abnormality uncovered at the time of diagnosis. It is, therefore, mandatory that these types of investigations should be available in Ireland so that Irish patients can avail of the type of treatment availed of by their European counterparts and that we also can be involved in the development of new types of treatment for these malignant diseases.
Solid tumours such as breast and colon cancer are also extremely important in the area of cancer genetics. Not only is the diagnosis of cancer made more accurate by the presence of the genetic abnormality, but it is now clear that certain congenital abnormalities of genes may predispose people to a high incidence of cancer, particularly cancer of the breast, ovary and colon, which we are discussing today.
Many studies in other countries have underpinned this. A recent study of Ashkenazi Jews  has pinpointed quite accurately the type of defects and how they can be diagnosed. I know the Minister is always grateful to me for my reading of medical literature. The paper I am referring to on Ashkenazi Jews is from Nature Medicine, volume 2, No. 11, November 1996. While it is not a central part of the paper, there is an interesting part where it points to an excess of pancreatic cancer in families with a certain mutation in their DNA in Canada and Ireland. We have quite an incidence of pancreatic cancer and one wonders if genetically there is pressure along isolated seaboards of Canada and elsewhere with low immigration figures over a long period. It may be important to look at such areas. If the Minister's officials are interested I will naturally give them a copy of this paper.
It is essential that Irish patients should have access to the types of diagnosis which will become more prevalent and common in future years. The above types of diagnostic tests require both that we should refer to a classical cario-typing — in other words, we have to get to know everyone's DNA — and also to more recently developed molecular genetic tests. Coupled with the knowledge that in the majority of cases cancer is an acquired genetic defect, is the requirement that careful counselling be given to patients by a consultant qualified in the area of medical genetics. Appropriate laboratory and counselling staff should be available so that tests can be interpreted and explained to the population who have the illnesses in question.
In summary, though inherited genetic disorders have traditionally been extremely important in terms of diagnosis and treatment, it is now obvious that malignant disease, which is a major cause of morbidity and mortality in our community, is commonly an acquired genetic disorder. It may also represent a congenital susceptibility to cancer. In some individuals current methods of diagnosis and treatment depend upon the provision of laboratory and clinical services to support the above strategy.
We must now surely begin to properly address the genetic screening of cancer. The Department of Health should at least have it on the agenda. I realise that the centre in Crumlin has restarted but what I am looking for is really not part of that centre's brief. I do not want to be chauvinistic about it but naturally in view of the great strides that have been made in the Department of Genetics in Trinity College, which I know the Minister is well aware of, I hope the Minister will see such a centre being associated with the Trinity department. I do not have to tell the Minister that the work they have done there is world class. One constantly sees the department's work quoted in medical literature.
Screening people with an inherited disposition to any disease, but particularly to something like cancer, is very emotive. Such are the increasing possibilities of a cure by looking at the genetic lesion in the cell and dealing with it, it is necessary  to incorporate genetic treatment into the cancer cell on a service basis.
One of the most incredible developments in medicine that I have seen in the last few years is that we are now getting to the stage of treating diseases on a molecular basis. We have the talent to do work on this and we have a community to look at. We have serious mortality and morbidity from cancer so I hope the Minister will put this aspect of cancer screening on his Department's agenda.
Mr. Maloney: I welcome the fact that this short Bill is being taken in the Seanad. One must welcome the establishment of the population register for national screening programmes for breast and cervical cancer. It enables the National Cancer Registry Board to continue collecting important data relating to cases involving all forms of cancer. Cancer is one of the major causes of death in this country and it is a worrying factor in any home where the illness recurs, because it is hereditary. Years ago cancer was something that just applied to elderly people but that has changed over the years and one now sees younger people stricken by the illness. In my own town last week we buried a young lad of 12 who developed cancer two years ago. The family wonders why it happened to them.
In certain areas of the country and in certain parts of the world the incidence of cancer is much higher than in others. I recently heard a consultant speaking about the incidence of bowel cancer in a foreign country he had visited. The incidence of bowl cancer was almost nil in that country because the staple diet was a strain of wheat. Here, however, the incidence of bowel cancer can be quite high.
The strategy the Minister announced last week is most welcome as a way of dealing with all matters relating to cancer treatment. The access to information relating to cancer treatment is important. It is not always easy for people to travel from Donegal to St. Luke's Hospital in Dublin or elsewhere for such treatment. I know it is not possible to find the necessary money for all forms of treatment required in every county but I welcome the developments that have taken place and the extra money the Minister has put in to develop these services.
We must look seriously at the promotional side of the issue. The Minister should ensure that as much money as possible is put in to promoting healthy life styles. Young people should be advised and educated how they can enjoy themselves without getting into dangerous areas like smoking. Many people still smoke even though it causes cancer and we do not seem to be able to get the message through to them.
Cancer research costs a small fortune. It is a world wide problem and every country is trying to do its best. Cancer prevention treatment has developed, which is most welcome, but we must keep our fingers on the button at all times.
 I am worried about the number of deaths from cancer in this country. The Minister mentioned a figure of 7,500, which accounts for a quarter of all deaths here, and one third of those are under the age of 65. That is a worrying factor. A figure of 660 deaths from breast cancer in people aged under 65 was mentioned. When one looks at the situation in relation to cervical cancer one finds a form of identification that shows that in 20 to 30 per cent of cases it can be avoided if proper screening is carried out. What we are discussing mostly concerns women but we have to get everyone to react to the problem. We must have organised screening programmes but it is not always easy to get the message through. People are wary of being screened, women more so. When women go for blood transfusions the fear of being rejected is a horrible thought. Once they get the first transfusion over they feel quite content, but if they reject it they feel they are not a whole person.
The principal purpose of the Bill is to comply with all legislation relating to data protection. It is important to have a population register which is regularly updated. As Senator Henry mentioned, it is also important to have an association with the Northern Ireland because there is much coming and going between both jurisdictions. We must get the message across that it is important for people to go for screening, even at an early age. People probably think they are healthy but lifestyles have changed, whether it concerns smoking, drinking or having sex, and it is important to have proper monitoring. A proper information package must be developed inviting people for screening. The Minister indicated that 75 per cent of women in the age group most at risk need to come forward for a proper programme to be developed. The correct approach is important. We have to reassure women that they have nothing to worry about.
Data protection was mentioned in relation to social welfare, the GMS payments board and health insurance boards. We must ensure people understand that their names will be protected and that information which should not be, will not be passed on. People will worry about this and we have to reassure them that it will be covered under the data protection legislation. This type of information cannot be passed on at present.
I support the thrust of Senator Finneran's amendment. I accept the Minister's sincerity and that he has no difficulty in principle with the amendment and that he cannot give a commitment to a screening programme because the jury in still out on whether it should be introduced,  but that he will introduce an amendment in the Lower House.
There has been major concern over the quality and level of cancer treatment facilities available throughout the country. I commend the Minister for his work in producing the major initiatives on cancer announced last November and the action plan for the delivery of these services announced on 4 March.
We are talking about a legislative amendment to ensure that screening programmes comply with data protection requirements. As such, it is an administrative proposal. I welcome discussion about female deaths from cervical and breast cancer. Cancer accounts for approximately 20 per cent of female deaths. Breast cancer is the most common cause of mortality from malignancy, accounting for approximately 650 deaths each year. This is a frightening number. Studies have shown that between 20 and 30 per cent of deaths from breast cancer in women over 50 could be prevented if a mass screening programme was established. This is of vital importance and urgency. I welcome the putting in place of measures to bring it about.
Recommendations for a national programme of breast screening were made in 1992 by the Second Commission on the Status of Women of which I was a member. In 1995 a women's health policy document was published and we had consultation throughout the country on it. We are now coming forward with proposals but I cannot help noting that it takes a long time from the raising of concerns to the implementation of national programmes. I know pilot programmes have to be set up, but this delay is frightening when one remembers the number of women dying from breast cancer. The possibility of saving the lives of these women must be addressed as a matter of urgency.
When I was elected to the Seanad after being a member of the commission, I thought this would happen during the lifetime of this Dáil and Seanad. However, it has not and we are now facing into another Dáil and Seanad. How long more will it take before a national screening programme is in place? I acknowledge the work done by the Minister and his commitment to this issue.
The Minister stated that cancer of the cervix accounts for 60 to 70 deaths each year. Cervical screening is a simple, quick and relatively inexpensive procedure. Not all women at risk respond to requests to attend for screening and I am particularly concerned with women who are GMS patients. Will the Minister clarify if women who are GMS patients can only have cervical free smears as a diagnostic rather then a screening tool?
The Minister said that “It will be important to run a pilot programme in the first instance to ensure that the national programme operates in the most effective manner”. The Eccles Street pilot project on breast screening was set up in 1989. That was eight years ago and we still have no national screening programme for breast cancer. The Minister spoke about 60 to 70 women  dying each year and that “In the case of cervical cancer, there is evidence that, where a pre-malignant condition known as CIN is identified, it can be treated with almost 100 per cent success. CIN usually precedes cervical cancer, so identifying it before it develops further is very important.” We are talking about saving the lives of almost all of the 60 to 70 women dying each year from cervical cancer and if we have to wait for seven or eight years for a pilot programme we are talking about the lives or deaths of over 500 women.
Considering what has happened in women's health, particularly in relation to the hepatitis C scandal, it is time we came out strongly and told women that we are concerned about their health and that we will put in place immediately measures to prevent the deaths of women. I do not want to be critical of the Minister but it is a very important issue. I ask him to finalise this as quickly and as urgently as possible. I appreciate his commitment to the treatment and prevention of cancer, particularly in women.
I welcome the major initiatives on cancer announced by the Minister in November and the main elements of the national cancer strategy, namely, the provision of cancer treatment services and their reorganisation throughout the country.
The Minister spoke of hospital treatment services being structured around the regional service involving the regional hospitals and the satellite hospitals in each of the eight health board areas. I understand an announcement has been made that there would be a lead centre in each health board area and that Tullamore would be the lead centre in the Midland Health Board region. The SCHARR report concerning the region looked at the three general hospitals in Portlaoise, Tullamore and Mullingar and felt that they should be treated as one hospital unit, developing special services in each area.
We have an oncology unit in Portlaoise which was opened by President Mary Robinson. There are two oncology nurses there and a visiting oncologist, Professor Donal Holywood. We also have a hospice in Portlaoise for the past eight years. Both the hospice and the breast cancer clinic and centre in Portlaoise were the first of their kind to be developed outside Dublin. They have the support and endorsement of Mr. Denis Doherty, director of the national development office which is being established to examine the country's health services.
However, there is concern that there will be further delay with regard to the provision of an oncology service and breast cancer centre in the Midland Health Board region if they are not allocated to Portlaoise. Much has been done there over the past eight years, especially the work led by consultant surgeon Peter Naughten, who only last year travelled to England, Wales and Italy to bring himself up to date with the latest treatments of breast cancer.
The people of County Laois, including those working in the hospital, have displayed extraordinary commitment to support, on a voluntary  basis, funding for facilities for these units. If we are committed to delivering these services to women as a matter of urgency, we must look at what we have, leave it in place and build on it, rather than developing a new unit elsewhere.
I ask the Minister to make a commitment to develop specialist services in each of the hospitals as recommended to the Midland Health Board by the SCHARR report. This would entail each area looking after specific health aspects, with the breast cancer and oncology centres for the region based in Portlaoise. It would do much to provide immediate treatment and services for those requiring oncology treatment, especially women.
Will the Minister indicate the position regarding medical card patients and cervical screening? Are patients entitled to smears free of charge? How long does he expect the pilot project on cervical screening to sit before there is a national programme? This may be difficult but it is a matter of urgency and while it may not be relevant to this debate I would appreciate the Minister's views, given that we are considering screening for breast cancer and cervical cancer.
I commend the Minister for this action plan, for the major initiatives on cancer he has announced and for the Bill he has introduced. He has an opportunity to deliver to women in the health area and I ask him to do so speedily.
Mrs. Taylor-Quinn: The Minister has been in office just over two years. Shortly after taking office he announced that a major priority would be the establishment of proper services to detect, treat and support those with cancer. As a woman, let me say that this is very important because for a long number of years many women, especially in rural Ireland, had little access to these services. Indeed, in many instances by the time they were assessed it was too late. We are all familiar with stories in rural constituencies of people being sent too late for treatment to St. Luke's Hospital or Hume Street Hospital, resulting in death from the lack of proper services. The Minister recognised this and is to be commended on the speed of his response. He has produced an action plan and a national strategy for the provision of cancer services. He is also to be commended on the work he has done in a short time and for the focus he has given to this area. As a women I can say it is most welcome.
I am delighted the Minister launched an implementation of the plan in the various health boards. There has been extensive consultations in each health board area and the proposals represent a dramatic advance on the service provided.
We must appreciate the extraordinary work done by the Minister with regard to the Mid-Western Health Board. He has proposed the appointment of a regional director for cancer services. This is important because the appointee will be responsible for organising and putting in place the national breast and cervical cancer screening programme. The preparatory work will be  exhaustive and will involve much research and preparation.
The appointment of a medical oncologist to the region will make it much easier to provide the necessary services to those who require chemotherapy and other cancer treatments. For too long people who were sick had to travel to Dublin. The provision of such services at local level will be of huge benefit.
I also welcome the proposed appointment of a haematologist to the Mid-Western Health Board. I appreciate that a specialist of that nature would have to be appointed to the Regional Hospital in Limerick, the central hospital within the region. The improvement work under way there is a big advantage to the region. This is also helped by the improvements and the commitments given by the Minister to the hospitals within the region, especially Ennis General Hospital. The people from the area appreciate his commitment because it means that general hospitals within their counties are now on a sound footing.
I welcome the Minister's announcement that he is to appoint a palliative care consultant to the mid-west region. A service of that kind is very important, especially for patients at an advanced stage of cancer. It will make life much easier and provide the kind of assistance people need at a traumatic time.
I also commend the Minister on his decision to establish a pilot programme in the mid-west region in respect of the national cervical screening programme. I look forward to the implementation of the pilot programme in the region and I hope the information which emerges will be of use in putting in place the national screening programme. The Minister has also decided to give £2.5 million over two years for Milford hospice, which has provided a fine service to people with cancer at an advanced stage. It has made life easier for them through the provision of a skilled professional service and it deserves every support.
This Bill deals with one particular aspect, having found during the course of the preparatory work that there is a difficulty in giving details of certain illnesses and patients. This Bill is important because unless the consultants have the relevant detailed background information they will not be in a position to make assessments and derive conclusions. The Bill is a positive measure for women's health. Since taking office the Minister has shown a great interest in women's health and his actions are proof of this. He has dealt with specific issues in a responsible and caring manner. Unlike previous Ministers for Health, he has dealt with the issues directly and, when necessary, provided financial and other supports to women. Despite claims to the contrary, this is evident from a cold assessment of the provision of real support, financial compensation in some instances and the positive action he is taking with this Bill. We have heard a lot of huff and puff from a variety of past Ministers but this Minister has acted in a positive and responsible fashion.
 Once the screening programmes for breast and cervical cancer are in place women should be contacted for screening to get them into the system. The special committees that have been appointed will have to examine closely the issues surrounding access to screening for women in isolated rural areas. It is often the case that it is too late when they go to the doctor. A strong publicity campaign in the national and local media will be essential to the success of the programmes, as will the compilation of a register of the persons concerned. I hope the special committees will be in a position to address these matters.
This legislation will be to the advantage of women. The Minister and his Department should be commended for their trojan work over the last two and a half years in putting together this national strategy, the implementation plan and bringing forward this Bill to enable the programme to be put in place as quickly as possible.
Minister for Health (Mr. Noonan,: Limerick East): I thank Senators for their contributions. Without this Bill we would be unable to proceed with the screening programmes we have planned and the breast screening programme we intend to commence in early June. The Bill focuses on screening for breast and cervical cancer, which has been successful. Men can get breast cancer but it is extremely rare and there is no screening process available for male breast cancer. The jury is still out, so to speak, on prostate cancer. Screening for prostate cancer can be introduced if found to medically effective in the future. However, there is no medical evidence yet that screening initiatives would be effective in respect of prostate cancer.
There is a range of cancers from which people can become very ill and die. Simply because we mention breast and cervical cancer does not mean that strategies are not in place for the treatment of other cancers. In the cancer strategy document and the action plan which I produced, the treatment of other cancers in the regional centres around the country will be vastly improved in the course of this year and over the next three years as the action plan is implemented.
This Bill deals more with data protection than health — it is an amendment to data protection legislation. It applies only to screening. The reason breast and cervical cancer are the only two cancers mentioned is that the action plan has two commitments to screening programmes, one for breast cancer and one for cervical cancer. The Bill is not imbalanced in gender terms nor is it an attempt to ignore prostate cancer or a range of other cancers, all of which are equally important. However, this amendment to data protection legislation is required to enable the screening programmes to proceed.
I understand Senator Finneran's point that at some time in the future, perhaps as a result of an EU wide survey on screening initiatives in respect of prostate cancer, the medical evidence on the effectiveness of such screening will be conclusive. If that is the case a future Minister for Health  may announce a screening programme for prostate cancer. I agree with Senator Finneran that while this Bill is before the Oireachtas we may as well make provision in data protection terms for that eventuality. I have given a commitment to do so. I will introduce an amendment along the lines the Senator has suggested.
I cannot accept the text of the amendment which the Senator intends to propose because I cannot have it scrutinised by the Attorney General's Office or the parliamentary draftsman. It is not irregular, nor is it intended to be disrespectful to the House, that I should introduce the amendment in the other House. It will have to come back to the Seanad in any event and the Senator will have a chance to comment at that point. The section refers to “the Minister for Health or a health board, hospital or other body or agency participating in any national breast or cervical screening programme...”. It may be sufficient to alter that to “...any breast, cervical or prostate screening programme...” in which case we would not need the full text of the Senator's proposed amendment. However, I will need to get advice on the matter from the Attorney General or the parliamentary draftsman.
I have no plan to introduce a screening programme for prostate cancer at present because there is no conclusive medical advice on its effectiveness. However, I am prepared to take it on board and make provision for the eventuality of a future Minister being inhibited in introducing such a screening programme, as I have been inhibited in introducing a breast and cervical screening programme, by the rigours of the data protection legislation.
Senator Henry informs us all very much on these matters and I thank her for her contribution. If we included items such as diabetes and coronary heart disease it would make the Bill very wide. The advice is that people have a constitutional right to privacy which is protected in statute law, principally in data protection legislation. If we make exceptions which, in effect, breach the right to privacy because of other rights, such as public health and personal health, we will have to be very specific. A Bill which was too broadly cast would not pass muster. As soon as we introduce other conditions, more and more of the population will be covered and we could have a situation where we were making exceptions in respect of the totality of the population under which a health board, hospital or Minister could pass on personal details to form a registry, and this would have certain implications.
There is merit in what the Senator said about people being screened for breast cancer receiving other checks at the same time. There is nothing in the Bill which prevents that. The enabling legislation is to allow the Minister, health board or hospital to acquire data and to allow the institution or individual to provide the data. The purpose is to establish a population register; people in the appropriate age group will then be notified and invited to participate, for example, in a breast screening programme. What happens when they  arrive for screening is a matter between the individual and the doctor. The intent is to have a screening programme but there is nothing in this legislation which rules out any other medical advice being given simultaneously.
The National Cancer Registry Board has links with Northern Ireland. They are not very formal links but there is a good working relationship and they contact each other on a regular basis. The two registries were launched at the one ceremony as part of the North-South health initiative by the two Ministers for Health.
In regard to molecular research, the Health Research Board accepts applications for research into all forms of cancer — molecular, genetic, clinical, epidemiological and health service research. The £80,000 per year is extra funding to allow the co-ordination of the research. One can tender for the money which is already provided across the range of research. The £80,000 which I announced is an extra initiative to co-ordinate the research so that we will get the best possible results from it.
Senator Finneran asked if the money which is being taken from every Estimate to pay the nurses will impact on any of the development money for cancer. It will not. The moneys provided for cancer in 1997 will be available in full and any adjustment to the Estimates arising from the settlement of the nurses' dispute will not reduce that money by any amount.
I think I have dealt with the main issues. I thank Senators for their general support. I ask Senator Finneran not to divide the House and to accept the commitment I have given to get an appropriate amendment to meet his requirements, to introduce it in the Dáil and to return to the Seanad the following day, if that is possible.
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