INFORMED DEMOCRATIC CONSENT? THE CASE OF THE ICELANDIC DATABASE

Abstract

The Icelandic Database provides a very interesting case study of controversies arising between the public and the private. In this case, "private" information, genetic information, was linked with "'public" information, genealogical records. The aim of this linking of public and private information in database form was intended to create a transparent and accessible network that would then help link the genetic cause and effects of disease, as well as create a platform for preventative treatment. However, this maintenance of a public record required contracting out to a private company, DeCode. This entry from the arena of public interest health data-basing to private corporate medical research prevented the network of the future uses of the genetic information from being known or "cut" ahead of time, thus rendering issues of consent highly complex. In this article, Arnason and Arnason argue that, despite 9 months of "public" debate, the instigators of the Iceland Database project violated the bio-rights of individual citizens by assuming a model of "community" consent. Furthermore they suggest that the financial and scientific interests behind the project meant that its approval was assured regardless of public debate, therefore suggesting the operation of a new kind of corporate "governance" of the body.