Genetic databases: Great results or great risk?

20.03.2002
A ‘population-based genetic database’ contains medical and genetical information on a large number of persons for instance from a certain geographic area. This type of database is supposed to supply researchers with information for projects on human genetics. In Iceland discussions are about establishing the Icelandic Health Sector Database.
A ‘population-based genetic database’ contains medical and genetical information on a large number of persons for instance from a certain geographic area. This type of database is supposed to supply researchers with information for projects on human genetics. In Iceland discussions are about establishing the Icelandic Health Sector Database.

By Marika Muhonen Nilsen

The newly established NorFA network The Ethics of Genetic and Medical Information studies the ethical and juridical problems concerning genetical and medical databases. The administrator of the network, professor of philosophy Vilhjálmur Árnason at the University of Iceland, points out several challenges regarding such a database.

Firstly, it contains sensitive information about individuals, information that might be misused for instance by insurance companies. Secondly, one can question the ability of the participants to really give an informed consent. Thirdly, who will benefit economically from this development and who will afford the new medical treatments resulting from the research?

Professor Vilhjálmur Árnason also reacts to the debate currently going on in Iceland:

- Much of the discussion both in Parliament and in society at large focuses on juridical and technical problems concerning consent and protection of the individuals. Some of the most important aspects are lost.

The establishment of such databases is also discussed in Estonia and Sweden, and Finland too has been the scene of controversial research funded on population-based material. These Nordic countries are pioneers and will probably set the standard for the future. That is why professor Árnason believes it to be crucial to establish a co-operation between these countries, a co-operation now made possible through NorFA funding.

(This article was published in Norwegian in the NorFA newsletter of March 2002.)
Newsletter
Facebook