Genes of a Nation

The Promotion of Iceland’s Genetic Information

Sigridur Thorgeirsdottir

University of Iceland

Abstract. The Icelandic Health Sector Database generated a huge political and ethical controversy. This controversy has served as a laboratory of a kind to test the viability of an individual, presumed and community consent to regulate participation in population databanks. When consenting to a database of a nation the question of how a database of population can affect the self-understanding and identity of a nation should become a matter of bioethical concern. The proponents of the database project (deCODE genetics Inc.) emphasize the relative genetic homogeneity of the Icelandic population as one of the major assets for a successful and innovative genetic research. An analysis of the marketing and selling of the idea of the Icelandic database shows how some aspects of its promotion stand in a tradition of a discourse on national identity that has influenced the way Iceland and Icelandic products are often introduced to other countries. Notions like homogeneity, purity, uniqueness, Vikings and blondes are instrumental for the analysis of this kind of promotional discourse. The Icelandic database-story is thus an example of how the identity of a population can (re)gain a genetic dimension in times of biobanks. The goal of this paper is to argue that the identity discourse should be an issue for a bioethical analysis of a case like this. Such an analysis can contribute to an understanding that enables individuals and communities to consent or dissent to participation in biobank research in an informed manner by elucidating some of the possible implications of a database of this sort for the identity of a nation or a population. By addressing this issue, bioethics puts the principle of consent that was at the fore of the debate on the databank law, into a broader context.