8th August 2001
It's as well to admit to it - I was a "yes" voter in the Nice referendum. To date I have met 29 other "yes" voters and 2003, approximately, who voted "No". I felt I was prepared to put up with quite a lot to have the applicant eastern and central European countries within the E.U. In the last century two world wars originated in those areas and the significance of the foundation of the E.U. on a steel and coal agreement should not be forgotten. Steel and Coal may not be quite as essential now for making war but they give an aggressor a good start.
After the vote I was sorry to see some Ministers displaying their lack of enthusiasm for the European project and particularly disappointed that these same people had poor records of attending relevant meetings of the E.U.. So many of the problems we say we encounter in life are blamed on Brussels when, in fact, they either originate at home or occur because of our lack of involvement in decision making there.
In June I attended a Round Table discussion in Brussels where E.U. member states and the applicant countries discussed matters to do with human genetics. I represented the Joint Enterprise and Small Business Committee of the Oireachtas which has as part of its brief insurance and patenting.
Most of the meeting in Brussels was on the vexed problem on the patenting of human genes. This is the order of the day in the United States of America ever since the Supreme Court there said it was possible to patent anything under the sun but the same is not universally accepted.
The first part of the meeting involved discussions on preventing insurance companies from using genetic tests to evaluate premiums for individuals taking out standard life insurance. Most European countries and many of the United States of America already have legislation in this area but we and the United Kingdom do not. We both rely on a voluntary code whereby the insurance company will not ask for such tests up to a £300,000 insurance level. The results of tests already taken can, however, be sought.
Professor Andrew Greene of the National Genetics Centre in Crumlin has long argued that we should have legislation banning genetic testing for insurance purposes. I have raised this in a Seanad debate on the Adjournment and whenever I can when debating Bills involving insurance. Very few people are happy to have their medical records used for any other purpose than informing those dealing with their health. There are, however, huge commercial pressures to disclose more and more medical details of patients. People fear that their medical records may be used to discriminate against them in various aspects of life. Recent articles in the New England Journal of Medicine point out that the onus of keeping secret these records causes increasing difficulty for doctors and in one article it was suggested that federal legislation to prevent insurance companies, banks, employers etc., seeking such information is what is needed.
More and more genetic testing is taking place and to quote Dr. Charles Welch, (NEJM 2/8/01) patients fear "they will suffer discrimination on the basis of genotype, even when it is weakly predictive of phenotype". Those interpreting such specialised tests in insurance companies or other institutions may have a very hazy grasp of the significance of results. Also, Dr. Welch points out, as well as the voluntary testing of adults there could be an expansion of the mandatory screening of the new-born. Medical records are likely to contain more and more information which is not only of importance to us but to other members of our family also. People have a right to privacy regarding genetic material. People have a right not to know their genetic make up as well as to know it. If I was 20 years old and knew there was a history of Huntingdon's Chorea in my family I don't think I would want to know if I had the gene. What would be the point when I wouldn't get it for 20 years or more and there is nothing I could do to stop getting it?
However, suppose one came from a family with a genetic problem which made one susceptible to a certain disease, let us say colon cancer, then to know would be useful, regular colonoscopies being in order. No one wants to put people off getting useful information because an insurance company may use it against one. Minister Noel Treacy is looking at the issue I hope so perhaps we'll get legislation in the autumn.
Senator Mary Henry, MD
