16 June 2005
An Cathaoirleach: I have received notice from Senator Henry that, on the motion for the Adjournment of the House today, she proposes to raise the following matter:
The need for the Tánaiste and Minister for Health and Children to take action regarding the inordinate delays in genetic testing at the national centre for medical genetics, Our Lady's hospital, Crumlin, given that breast cancer test delays can be more than one year, despite the fact that more than €2 million has been given to the centre recently by her Department although a cap on staffing in the hospital means these funds cannot be used.
I regard the matter raised by the Senator as suitable for discussion on the Adjournment and it will be taken at the conclusion of business.
Dr. Henry: I welcome the Minister for State at the Department of Health and Children, Deputy Brian Lenihan, to the House. I know he realises that the issue I am addressing is very serious. Unfortunately, breast cancer is a very common problem in Ireland, with approximately one in ten women being affected by the disease at some stage in their lives. A small number of these cancers are found in families genetically predisposed to getting the disease. Irish scientists have done important work in elucidating the genetics of the disease.
I spoke about this issue years ago and the problem we faced with a US company called Myriad, which was trying to patent the DNA sequences so it could insist that all tests carried out in Ireland were done through it, for which it would charge a considerable fee. We were at the forefront of fighting this patenting proposal in Europe and, fortunately, we won. Myriad lost most of the cases regarding the patenting of tests for breast cancer. In general, this was due to inaccuracies in the DNA sequencing it put forward.
Ireland and other countries are in a position to carry out tests for those genetically predisposed to breast cancer. However, it is not possible to carry out genetic testing because there is a cap on staff numbers in Our Lady's Hospital for Sick Children in Crumlin, which houses the national centre for medical genetics, which carries out these tests, even though more money than ever before has been spent on cancer genetic services in the centre. This cap applies to the centre, as well as the hospital. Facilities have been put in place there for additional staff, laboratories have been built and consulting rooms put forward but at the same time, there is a deficit of approximately 35 staff who are needed. They include counsellors, consultants and technical staff.
It is important to remember that these people are urgently required not simply for the service that the national centre for medical genetics was trying to provide itself but also because the private clinic in Galway, which did not have an adequate medical input, was forced to close down earlier this year. Staff at the national centre for medical genetics have been forced to deal with the additional workload created by the Galway clinic's closure while no change has been made to the cap on staff at Our Lady's Hospital for Sick Children.
Breast surgeons constantly contact me to complain about the fact that if they have a patient who they feel is genetically predisposed to breast cancer, they are in no position to get the other members of the patient's family counselled and tested. If a young woman aged around 36 years presents with breast cancer, gives her family history and is discovered to have an aunt who suffered from breast cancer, she, her family and her consultant are very keen to get the family tested as quickly as possible. Those who would need to be tested include the mother and a sibling or siblings, possibly aunts. If an older woman presents with breast cancer, her daughter or daughters may need to be tested. It takes over a year for these people to be given a simple blood test and the results assessed.
This is extraordinarily unsatisfactory and puts a great strain on all the people involved, including clinical staff. The upshot of this is that tests are being sent to Myriad in the US to be processed at the cost of $3,000 per test. While we won, we also lost because we are unable to carry out these tests in our own country, having put such effort into ensuring that we would not allow patents to go through on what we discovered in this country. We have a person in the national centre for medical genetics putting blood tests into packages and sending them to the US to be tested at a cost of $3,000 per test rather than having some counsellor talking to patients, a technician carrying out the laboratory work in the centre, the Irish public having the benefit of these people working here and the Exchequer getting its taxes.
This situation is ridiculous and I suggest to the Minister of State that many people would find it ridiculous as well. I ask him to make some suggestion as to how this ridiculous situation can be rectified so tests can be carried out in this country, as they should be. The Exchequer should not have to bear this dreadful cost. Patients are being seriously disadvantaged by the current situation.
Minister of State at the Department of Health and Children (Mr. B. Lenihan): The national centre for medical genetics based at Our Lady's Hospital for Sick Children in Crumlin was funded by the Health Research Board in 1998 to carry out a collaborative study on the implementation of testing for hereditary breast cancer in Ireland. This study has established the technology and expertise for screening for mutations in the BRCA 1 and BRCA 2 genes and has provided important information about the frequency of particular breast cancer gene mutations in the Irish population. The study also established expertise in Ireland in assessing and counselling families with hereditary breast cancer.
Since 2003, a cumulative sum of almost €1.8 million has been allocated for cancer genetic services to the national centre. This includes approval which was given in 2004 to extend the national testing programme at the centre, supported by the appointment of an additional consultant clinical geneticist. The Department of Health and Children is working closely with the HSE and the national centre to further develop this service.
The HSE has informed the Department that the national centre is in the process of upgrading its facilities and renewing and modernising much of its laboratory equipment at present. The hospital advertised in 2004 for the post of consultant clinical geneticist and interviews took place in January of this year. However, the hospital was unable to appoint a suitably qualified candidate. It will shortly re-advertise the post of consultant clinical geneticist with a special interest in hereditary cancer and hopes to appoint a suitable candidate towards the end of this year.
The hospital is currently outsourcing much of its cancer genetics testing internationally and is in discussions with the Health Service Executive about the employment ceiling and the difficulties involved in recruiting staff for the genetics service. The hospital is also exploring the feasibility of outsourcing, as an interim measure, the necessary counselling and backup required for women who have been identified as having an increased risk of breast cancer. These strategies are aimed at reducing the current waiting times in genetic testing.
Major advances have been made in recent years in cancer genetics. The increasing worldwide understanding of the role of genetics in the provision of cancer care is leading to an increased demand for the development of services in the area. This presents major medical, organisational and financial challenges which need to be addressed to ensure that patients get the highest quality care. The opportunity now exists to bring policy into line with medical advances in the area and to develop cancer genetic service provision.
A subgroup of the National Cancer Forum on genetics has examined the specific areas of inherited familial predisposition to cancer, cancer risk profiling of persons without inherited mutations and molecular diagnostics and molecular therapeutics. The work of this subgroup has informed the recommendations of the forum in terms of genetics. It is anticipated that the strategy will be completed in the autumn.
In conclusion, I again confirm the Government's commitment to the development of the national cancer genetics service. The Government will continue to work with the Health Service Executive to ensure that the best service possible is made available.
Dr. Henry: I thank the Minister of State for his reply but this is a chicken and egg situation. We will not get a good consultant clinical geneticist until the service is properly established.
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