The decision by the Irish Insurance Federation to introduce a voluntary code to guard against the use of genetic information in determining eligibility for life insurance is a positive step. However, this move by the industry is by no means a satisfactory tool in insuring that discrimination will not take place on the basis of genetic make up. Moreover, this initiative by the insurance industry should not act as a reason for the Government to be complacent. It is vital that legislation is put in place by the Government to ensure against discrimination on the basis of genetic make up, particularly in the area of life insurance but also in employment opportunities and in accessing credit and other such services.
Throughout Europe governments are making decisions on whether to legislate for the use of genetic information by insurance companies to determine premiums. Our neighbours in the UK have already agreed to the use of genetic information in the insurance industry and my fear is that without strict legislation here, the use of such information may eventually become a reality in Ireland also.
While the guidelines by the insurance federation are welcome, they have their limitations. They only apply to people applying for life assurance worth up to £300,000 and not above that limit. In addition, they are voluntary and this is no guarantee against the use of genetic information in determining insurance premiums. Besides, unless we have legislation outlawing the creation of what could become a genetic underclass, discrimination can occur in a whole range of areas such as employment and education.
The implications arising from the completion of the human genome this year are being ignored by the Government. While such a breakthrough in determining the mapping of the human genome will have positive outcomes, it is crucial that we keep up to speed on how this information on genetic make up is being used. When the breakthrough came in mapping the human genome I raised the point that the coding of the genome had the potential for the discrimination of people based on their genetic make up, thus possibly excluding them from employment, preventing them from obtaining insurance, biasing their opportunities for a place in school or affecting their rights in court. On foot of this I wrote to the Minister of State with responsibility for science and technology asking him to establish a special committee attached to the Oireachtas to examine developments in genetics and to prepare guidelines for the use of genetic information. To date there have been no moves to convene such a committee despite the fact that one is operational at EU level.
As politicians we have a responsibility to guard against a genetic underclass arising from this breakthrough in the mapping of the human genome. Insurance companies should not be able to access a person's genetic data. New genetic information should be used for purposes of improving the quality of life and not in order to penalise people because of their genetic inheritance. The use of genetic information by the courts should also be strictly monitored.
It is now time for this Administration to wake up to the advances which have been made in genetics. Legislation should be framed promptly in relation to the use of genetic information before we reach a situation of mass discrimination of people who are born with genes which could lead to life threatening conditions.
The mapping of the human genome is very complex and detailed. It has enormous potential, for example in the area of gene therapy, to control and even eliminate some diseases. However, we must ensure that the rights of the individual are not diminished or compromised arising from these developments.
