Sir, - We are writing to support strongly the letter from our colleagues in the genetics department of Trinity College, Dublin (October 31st). The vast majority of research and clinical geneticists world-wide would not agree with the use of genetic information for insurance purposes. Genetic information is qualitatively different from other medical information, and should be inherently private.
It is likely that in the near future a code of practice will be introduced in the Irish insurance industry, whereby a person applying for insurance will be expected to reveal the results of genetic tests previously taken, before the insurer will decide whether to provide cover. This code is similar to that recently introduced into the UK.
However, the UK insurance industry's code is out of line with practice in 18 US states, and with that in many EU countries. In those jurisdictions, legislation has already been introduced to exclude the use of genetic information in obtaining insurance. Furthermore, the UK code was introduced against the advice of an expert UK government commission on genetic testing.
As practising clinical geneticists, we see many families with genetic disorders, where healthy family members could have a predictive genetic test which would tell them whether or not they or their children would develop the genetic disorder known to be in their family. Having such a genetic test is often intensely stressful for the person involved.
In the discussions about the advantages and disadvantages of such predictive testing, the issue of insurance always arises. We have met a number of families where the issue of insurance has been the factor that actually deterred a person from taking a test. Such additional pressure on a person taking a genetic test is unfair and unwarranted.
We propose that this code not be implemented, and that formal legislation be introduced to regulate the use of genetic information, as in other European countries, for the benefit and protection of those with genetic disorders. - Yours, etc.,
Rosemarie Kelly, Jacqueline Turner, Genetic Counsellors, Andrew Green, Professor of Medical Genetics, National Centre for Medical Genetics, Our Lady's Hospital, Crumlin, Dublin 12.