27th June, 2001
Dr. Henry: I move:
That Seanad Éireann calls on the Minister for Enterprise, Trade and Employment to introduce, as a matter of urgency, legislation banning the use of genetic information by insurance companies or employers particularly in view of the fact that the Government has signed the European Committees (Legal Protection of Bio-Technological Inventions) Regulations, 2000; and in view of the importance of the bio-technology industry in Ireland to outline the Government's policy on the patenting of genes.
I am delighted to welcome the Minister of State at the Department of Enterprise, Trade and Employment, Deputy Kitt, to the House as he witnessed some of my anger about this topic when he addressed a meeting of the Oireachtas Joint Committee on Enterprise and Small Business yesterday. I am very impressed at the size of the team which accompanies him as it must indicate this matter is being taken very seriously.
I was extremely pleased to be sent last week by the Oireachtas Joint Committee on Enterprise and Small Business to a meeting in Brussels of the temporary committee on human genetics established by the European Parliament. However, I was rather depressed to discover that round table discussions in this area have been ongoing for almost six months although we have had little input into them. Senator Avril Doyle attended part of the meeting although she was also obliged to attend another committee meeting on the issue of water. Many of the meetings held within the European Parliament are not simply for the benefit of MEPs; members of national parliaments are also encouraged to attend these meetings.
I sympathise with the Minister who was recently obliged to travel to Madrid where Ireland became the 51st country to sign up to a very important trademark directive to which other EU countries signed up years ago. We must take EU directives more seriously in this country at the time of their introduction rather than moaning and groaning about their provisions at a later date. It is a great pity that we do not enthusiastically engage in debate on EU directives. If sufficient staff are not currently available in various Departments to deal with these directives and to facilitate people travelling to Europe, additional staff must be appointed. The civil servants present will be delighted to hear that I cannot wait for the introduction of benchmarking which will confer a real sense of importance and value on some Civil Service and public service positions.
The temporary committee on human genetics was established as a result of the perception that directives on bio-ethics are becoming outdated at a rapid rate. The committee members asked whether a public debate had occurred in Ireland on this topic to which I was obliged to answer in the negative. Would we find ourselves in our current predicament about genetically modified organisms in plants if the matter had been properly debated when it first came to light?
I am particularly concerned about the manner in which the insurance industry may use genetic testing. A 1995 paper published in America, the land of the free market, states:
To the extent that insurance is a business, insurance companies will be duty bound to use genetic screening to exclude affected families from the insurance pool but, in so far as insurance is a communal, moral enterprise, the exclusion of the ill from the insurance pool is unacceptable.
All of us are used to being asked various questions about illness in our family and so forth when we take out insurance and we are able to reply to them, but when we are asked about genetic testing, it is a different matter. The fact that a person's mother or father died of heart disease may not mean that a person has a genetic predisposition to it. It may mean that person's parents smoked, drank, stayed up all night and did not go to bed early like that person does. The implications of having to ask someone for a test might mean that the person concerned will not take it if he or she has a genetic disposition to cardiac disease. Because that person does not want an insurance company to know that is definitely what happened to his or her parents, that person may not make the lifestyle changes which could affect his or her life in a proper manner.
We have a large number of diseases with a genetic base because we were pushed to the edge of Europe and until recently there was not much immigration. We all come from very much the same genetic pool. There is a problem in that there is a basic consanguinity among a very large number of us.
The insurance business is entitled to have a basic level of knowledge about us, but for it to provide a basic level of cover, it is not entitled to look for our genetic make-up. There must be solidarity between those whose genes may not be as glamorous as others. We need rapidly to develop a debate on this subject.
The Government is one of the only governments in Europe that does not have legislation regarding the use of genetic tests and the insurance industry. Even the United States introduced legislation on genetics and the ethics of genetic counselling and I have the debate on that US Senate Bill. The United Kingdom does not have legislation banning genetic testing. It has had a voluntary code on genetic testing in place for some years, but that has not proved to be satisfactory. This is important to us because the parent companies of most of our insurance companies are United Kingdom companies. We should introduce our own legislation on this area immediately. The British will introduce legislation, but that will only affect the companies in Britain.
If people take out expensive insurance to insure themselves for £1 million or £2 million rather than, say, a life assurance policy one must take out to buy a house, the position must be fair to the insured and the insurer and we can consider that in a different manner.
We must remember that genetics is in its infancy. We do not even have standards regarding laboratories that might be set up to carry out genetic testing. This reminds me very much of a Bill I tried to bring in setting up a register of institutes that were giving in vitro fertilisation advice or therapy. We do not even have that. That was a Bill I introduced four years ago, an area on which we were told legislation was to was to be enacted shortly. "Shortly" can mean four years.
Home kits are being produced which people can use to do gene testing on themselves. I could not vouch for the accuracy of them. If people feel they will be driven to do this regarding genetic testing, one can imagine the great worry that could be caused and the many mistakes that could be made. Insurance staff may also have a great deal of trouble interpreting the test results they are given. This is particularly important in America where sickle-cell anaemia is quite common. Sickle-cell anaemia only develops if one inherits the gene from one's father and mother. Insurance company staff were loading people who had only a sickle-cell trait. In other words, they only had one parent with the trait, and not necessarily the disease. There is also not widespread availability of testing here. It would be a grave imposition to allow this to progress.
It is important to remember that genetic information is not totally about one person alone. If it is discovered that a person has one gene that is considered unacceptable to an insurance provider, it may also ask about the person's parents, siblings and children. That data could be used to spread loading on other members of the person's family.
The situation in the United Kingdom got unpleasant at a certain stage where, for example, people were asked to have tests for hereditary kidney disease, breast cancer and Alzheimer's disease. Is it right to ask people to have a test for something for which there is no known cure, for example, Alzheimer's disease or Huntingdon's disease, both of which result in the early deterioration mentally and physically of the person and for which there is no known cure? Should one be obliged at the age of 30 to take such a test? People should have the right not to know such information as well as the right to know. Our genetic counselling services are also very shaky. There are many ethical issues to be examined in this area. It is far too sensitive to be let into the hands of a commercial concern such as an insurance company.
The progress made in research on the human gene has been fantastic and much more rapid than we expected, thanks in the main to the collaboration of various laboratories on an international scale who disclosed the information as soon as they had it, but if that had been kept to one private laboratory, one does not know whether that information might have been disclosed. A situation could develop where persons would agree to be tested for one disease and a gene chip could be produced, which would allow a person to seek information on a sequence of DNA, and another faulty gene could be discovered that the person did not want to know about or did not agree to let information be known about. That is also a major ethical issue.
All this is of major importance in setting ourselves up properly in the genetic area and the area of genetic patenting. The Environmental Protection Agency looks after everything regarding patenting within laboratories to make sure that is all right. We have not made any effort to set up a central commission or council on genetic patenting, not only human but all genetic patenting. It is important to remember that while the last century might have been the century of physics, the one before that the century of chemistry, without a shadow of a doubt this will the century of biology and bio-technology
I commend the intergovernmental report on modern biotechnology which is superbly written. A great deal of trouble was gone to in the writing of it. It points out the consequences of public hostility to bio-technology. It is most important we try to do something about that. It also refers to the medicinal products of genetically modified medicines.
We have a large pharmaceutical industry, which is very lucrative. Forfás is working on various projects and BioResearch Ireland is helping to translate the university ideas and projects into commercial companies. Elan, Intergen, Genzyme, Schering Plough, Eli Lilly and many others are operating on a smaller scale. All of them are heavily involved in innovations which have been brought forward due to the discovery of different genes and their properties.
A major debate is taking place within the World Trade Organisation regarding whether a gene is a discovery or an invention. One has to come down on the side that the properties of the gene are the invention because the gene is common to our ancestral heritage. We should try to get more involved in that debate at a local level. I have heard very little about it.
The money being put into research here is staggering compared to what it was a few years ago but it it important to remember that the money put into research in Europe by various governments and corporations is only about one-third of the amount of money put into it in the United States. It is suggested that their patent law means they have been able to forge ahead but those involved in the research do not subscribe to that view. They believe what is more important is the fact that more money is being put into it.
Part of the meeting dealt with trying to encourage European Union companies to invest more money in current research in genetics. If novel patents are found for various diseases, it is the various governments who will have to buy back those novel drugs so if they were involved with a good share in the beginning, it might be financially worthwhile.
I asked about the Government's policy on genetic engineering because I could find little documentation on genetics apart from the Fianna Fáil position paper on the genetic engineering of food which was published in 1997. However, I am sure that Fianna Fáil, being a modern political party, has substantially updated its position since then. I look forward to hearing the Government's policy on patenting. I considered using the word "philosophy" but then thought I might be going a bit far, so I used the word "policy". I am sure the Minister will enlighten me this evening.
Dr. Henry: I thank the Minister and I thank Senator Mooney in particular for his most supportive speech. It is no wonder he had to be reminded to move the amendment. I cannot understand why the Government puts down amendments to motions such as mine because we were ad idem about it. I was pleased with the Minister of State's contribution apart from a few points. He was too kind to the insurance companies. The insurance companies make plenty of profits. I tried to bring forward an amendment to the Health Insurance (Amendment) Bill the other day to deny genetic testing but I did not succeed. We need to start nipping off these areas because £300,000 sounds a lot of money now but maybe they will maintain the £300,000 figure for a while and it will not seem a large amount of money in the not too distant future. Senator Dino Cregan spoke about the importance of insurance in the field of business.
The great and the good are certainly in the Royal Irish Academy. It is a tremendous institution but I am a great believer in humbler folks having an input into this area. Society has to have a great input to this debate, not just scientists. That is important. Senator Quinn talked about people who give us their opinions about how safe such and such a product is and that there will never be a problem with it. We never know with whom they are connected. To get money for research in Ireland, a large number of people have to go to the pharmaceutical companies. There are marvellous employers here but we have to keep our wits about them. I am delighted with the Minister of State's comments about the TRIPS Agreement. It was so easy for them to give in on something like the provision of anti-AIDS drugs for South Africa, Brazil, etc., because, for Heaven's sake, they will not have the infrastructure to supply the needs of the people. Companies which are making the drugs are the only ones who will make anything out of that.
I am sorry the amendment was tabled. I presume the Government does not want to amend it. I note the all powerful figure, Senator Fitzgerald, has arrived.
Mr. Mooney: It is all his fault.
Dr. Henry: I cannot accept the amendment. I wish the Minister of State good luck in Qatar. They are brave to have a meeting there. I suppose the regime is a little firmer than Gothenburg and there may not be as many troubles. The lack of information on biotechnology has driven them to taking this type of action when we badly need more discussions. I hold the Minister of State to his promise that he will organise the next discussion on this topic long before he goes to Qatar so that we can give him pointers because this House sometimes has useful information and ideas. Given our large bio-technology industry we should take a serious interest in patenting. Of course, I realise that the convention has nothing to do with insurance. I apologise that the semi-colon got in the wrong place.
Amendment put.
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