Genes of a Nation the Promotion of Iceland's Genetic Information
Thorgeirsdottir, Sigridur, Trames
At the beginning of the year 2000, deCODE Genetics, Inc., a profit-making genetics company, received a private license to construct the Icelandic Health Sector Database (HSD), based on a law passed two years earlier. It was foreseen that the database containing the healthcare data in the health records of all Icelanders alive and deceased could be coupled with a genealogy and a genotypic database thus yielding a super-database. The database got a great deal of media coverage in and outside of Iceland for it seemed to herald a new era of large-scale bio databases. The reactions to the enterprise were characterized by astonishment, admiration or fury. Now, four years later, the database project, as originally planned, seems to have stalled. It is unclear whether it will ever be realized, but the company nevertheless continues its work in population genomics and pharmacogenetics.
The most controversial aspect of the law on the database was the fact that the handing over of the medical records to deCODE was to be based on the "presumed consent" of the patients and not their "informed consent". The case of the Icelandic database has been a forerunner of its kind, and can thus serve as a laboratory to test the applicability of some of the core ethical principles of scientific research in times of bio databanks. The database case is a test for whether traditional principles like informed consent can stand up to the ethical challenges that the population databases confront us with, or whether presumed consent or community consent suffice to secure the ethicality of participation of a population in this case. These questions on consent have been dealt with extensively in an array of writings on the Icelandic database case. A brief overview of some of the focal points of this debate will be given before turning to the main topic of this paper. One of the problems that bioethics has not dealt with at any length in the Icelandic database controversy is the question of how the database of the Icelandic population relates to questions of the self-understanding and identity of the nation. The proponents of the project at deCODE have namely emphasized the very specific composition of the gene pool of the Icelandic people as one of the company's major assets for a successful and innovative genetic research. Notions of a population's identity conveyed through databank research should be an aspect of the public deliberations centering on individual and community consent. By examining the possible implications of such a research project for the identity of the population, bioethics can contribute to an understanding of what is being consented to, or rejected. The question of identity should be a part of the public deliberation on consent. With hindsight it can therefore be said that the bioethical approach in the debate on informed or presumed consent during the height of the debate was too narrow. A bioethical analysis of the identity dimensions of the database can illuminate and scrutinize the wider context of the issue of consent. Bioethics can thus contribute to putting consent or dissent into context. (1)
2. Genetics, populations, races and nations
According to deCODE's research findings a "relative genetic homogeneity" is characteristic of the Icelandic population (deCODE's Annual Report 2000:3). This statement is backed up by research done by genetic anthropologists at deCODE who trace the genetic origin of the Icelandic people (Helgason et al. 2000, 2003). Such work within genetic anthropology has thus added a new dimension to existing historical and demographic theories of the formation of the Icelandic nation.
This development within genetics can have far reaching implications, and not only for Icelanders. Given the increasing demand not only for population based databases, but also for national databases especially for forensic reasons--we are for example witnessing that in Britain--there is an increased pressure on citizens to contribute their DNA to such databases (Tender, Ford 2003). …