Sir, - The Huntington's Disease Association of Ireland represents over 400 people who have been diagnosed with this condition. The children of these people have a 50 per cent risk of inheriting the disease, a considerable burden on top of normal life struggles.
Through a simple blood test, medical science can now with absolute certainty tell any adult in this group whether they carry the defective gene. If you have the gene, you will develop the disease. Therefore, for those at risk, genetic testing is often an intensely stressful procedure. Further worries over insurance implications can only add to that stress.
A person not wishing to take the test (a perfectly valid position) might find himself/herself pressurised to have the test in order to get insurance cover.
A person considering taking the test might be discouraged by the fear of being refused insurance cover in the future.
The proposed introduction of this practice by the insurance industry in Ireland is out of line with the practice in all other EU countries except the UK.
The Huntington community celebrated when the gene was discovered in 1993 as we had played a large part in the discovery. Can you imagine our dismay now that this discovery is to be used to exploit us? - Yours, etc.,
Philip Byrne, Chairman, Huntington's Disease Association of Ireland, North Brunswick Street, Dublin 7.