11th April, 2001
Dr. Henry: I am delighted the Minister for Education and Science is taking the debate. I agree with what he said on the Private Members' motion. There is a large amount of interconnecting research at post-graduate level. That ties in with my concern about the topic of genetic testing, which I wish to raise.
Patients may be deterred from seeking genetic testing which could be beneficial to their health because of fears that it would adversely affect their status with insurance companies. The Minister of State with responsibility for science and technology, Deputy Treacy, has been kind enough to listen to my concerns in the past and he has said that his Department will try to make progress in this area as soon as possible. My constituents in several medical areas, including molecular genetics and cancer, have impressed on me that legislation in this area is urgently needed.
To summarise the medical situation, we know that some people have genetic susceptibilities to some diseases and that ameliorating measures can sometimes be taken to modify the effects of these genes. For example, Irish people have a high level of cardio-vascular disease. In recent years it has been discovered that lack of an enzyme to lower the level of homocystene in the blood is associated with cardiac disease. The presence or absence of this enzyme is genetically determined, but if a person who lacks this enzyme increases his or her intake of folic acid, homocystene levels decrease and damage to the heart decreases. Therefore, in spite of any genetic predisposition, one can do something about the condition.
This shows how important it is that we identify people with this predisposition, so that they can increase their folic acid intake. Indeed, the condition is so common in Ireland that I have previously suggested that we should fortify bread with folic acid. Because of our genetic predisposition to having problems with regard to folic acid, we already have the highest incidence in Europe of spina bifida and other neuro-tube defects. The House will be aware of the television campaign to encourage women who are contemplating pregnancy or who are in the early stages of pregnancy to take folic acid to ameliorate the effects of the genetic susceptibility.
Individual patients may be afraid to take this test because they fear an adverse effect if they seek life or health insurance. There is no certainty that a person with high levels of homocystene will develop cardiac disease, but generally speaking it is wiser for them to make efforts to reduce it. Interpreting genetic testing is difficult. There are multifactoral conditions involved in this issue and many genes, rather than one gene, may be involved in the development of a specific condition.
Newspaper reports imply that members of the Government's national cancer forum have told the Department of Health and Children that genetic testing should be part of the treatment and care of patients and that it should be integrated into cancer prevention and treatment services. Genetic testing could be used, particularly within susceptible groups or families, to determine if a person is more susceptible to a particular type of cancer. For example, bowel cancer is a very serious problem in Ireland, our incidence being exceeded in Europe only by the Czech Republic. Just because a person has a genetic susceptibility, this does not mean that he or she will get cancer. As I have said, many factors are involved in the development of cancer, but a change of lifestyle might help to lessen the risks of developing cancer.
If insurance companies are allowed to request applicants for insurance to undergo genetic testing before granting cover, some people will be seriously disadvantaged because genetic testing is in its infancy and complex questions frequently have to be asked about the interpretation of results. Insurance company personnel may not be the best people to do this assessment. A simplistic assessment of genetic tests could lead to serious disadvantage to some patients. Where a person has an existing genetic disorder, it is the same as when a person has an existing illness and information must, of course, be disclosed to the insurance company.
A particular example would be a young person from a family with Huntington's chorea. This is a fatal neurological condition which involves a gradual physical and mental deterioration, but this does not develop until a person is in his or her forties or fifties, prior to which he or she may lead a perfectly normal life. There is no cure for this disease. If insurance companies obliged young people with a family history of Huntington's chorea to take a genetic test, what might be the effect on a person who showed a positive result to the test? They might even contemplate suicide.
It could be beneficial to insurance companies to encourage people to have genetic testing for their own good. For example, in pharmaco-genetics, we know that some people have a genetic susceptibility to certain drugs. It would be to the insurance companies' advantage to let such people find out about these conditions, so that adverse reactions could be avoided. Those with a predisposition to certain conditions could modify their lifestyles and thereby lead longer and healthier lives. This, of course, would also benefit insurance companies.
Once again, I emphasise that this is a very complex issue. The Association of British Insurances already has a code of practice under which genetic testing will not be sought for all relevant types of insurance, including health and life insurance. The same companies are also major operators in the Irish insurance market. It has been suggested that not all companies are honouring this voluntary agreement and that some are asking for genetic testing. I suggest to the Minister that a voluntary code is not adequate and that legislation is needed in this regard.
Minister for Education and Science (Dr. Woods): The use of genetic information for insurance purposes raises specific and complex issues. It should be remembered that the actual science involved is developing at a very rapid rate and there seems to be uncertainties at present regarding the science itself, actual testing and the appropriateness of using the results in the insurance area.
There are also wider issues involved, including public health, protection of personal data, insurance solvency and consumer protection. It is, therefore, appropriate that wide consultation takes place before any policy decisions are taken. This is what is actually happening at present. Senators may be aware that the insurance industry in Ireland does not request genetic information about those applying for life assurance policies. There is, therefore, an opportunity for all concerned to engage in the discussions and consultations that are ongoing.
Officials of the Department of Education and Science are currently involved in a number of consultation processes, both within the Department and outside it. In the departmental area of responsibility of the Minister of State, Deputy Treacy, consultations have taken place with the Office of Science and Technology and the Office of the Director of Consumer Affairs. The Department of Health and Children and the Society of Actuaries in Ireland have also been consulted. These consultations have not yet been concluded.
In addition, the Department is involved with a group set up under the auspices of the Department of Justice, Equality and Law Reform and comprised of officials of that Department, the Department of Health and Children, the National Centre for Medical Genetics - Our Lady's Hospital, Crumlin - the Huntington's Disease Association of Ireland and the Inherited Disorders Organisation. A number of meetings have taken place and the work of the group is progressing.
A task force on biotechnology was established by the Irish Council for Science, Technology and Innovation - ICSTI - which operates under Forfás. I understand that it recently submitted a report to the council and that this is currently being finalised for publication in the near future. The Irish Insurance Federation has already prepared a draft code of practice on genetic testing for its members. The draft code sets out the conduct to be followed by the industry in Ireland in regard to use of genetic tests and seeks to balance the legitimate interests of insurers and of the totality of policy holders with the concerns of individual consumers. The IIF has engaged in consultations on the draft code, including the Department of Education and Science and the Department of Justice, Equality and Law Reform group, which I have already mentioned. I understand that the IIF regards those meetings as very productive and that they have influenced the proposals that the IIF will bring forward in the coming weeks.
As I said at the beginning, the insurance industry in Ireland does not request genetic information about those proposing for life assurance policies and does not and will not require applicants for insurance policies to undergo a genetic test to obtain insurance. The requirement to disclose a previously undertaken genetic test is to protect the insurance company from being selected against and to protect other insurance policy holders who would have to pay more into the insurance pool. The Minister of State at the Department of Education and Science, Deputy Treacy, has asked his officials to inquire further into how significant this increased risk might be and what the resulting increased cost to the pool would be.
The Minister is open to persuasion on the need for a legislative framework in this area and I have noted what Senator Henry has said. I fully accept that public health policy concerns are legitimate and of enormous importance. Once the consultation process which is under way has been completed, he will consider the issue of legislation in the light of the results of that process and in the light of the views expressed in this House and in the course of public debate.
Dr. Henry: I thank the Minister and ask him to pass on to the Minister, Deputy Treacy, my concern that insurance companies should be aware that it might be of benefit to them that people know their genetic make-up because they may be able to do something to moderate its influence.
