Mapping the Icelandic Genome

About this Site

In 1998, a biotech company, deCode Genetics, headed by a charismatic Icelandic physician and geneticist, Kari Stefansson, proposed an audacious and controversial project- to produce a comprehensive genomic map of the Icelandic people. Although some would contest the scientific worth of such a map, the core controversy has arisen over deCode's proposal to keep that map and its associ ated data in the private realm while claiming to protect the economic, health and ethical interests of the Icelandic people.

Iceland has a series of distinctive characteristics. Its population is relatively small (today 275,000 but as low as 50,000 in the recent past). There exist an unusually complete set of family records in Iceland (over 80% of all Icelandic people who ever lived can be placed genealogically on a computerized database). The population is understood to be highly homogeneous. There exist comprehensive clinical records of Iceland's public health service dating back to 1915. The population is entirely literate. Iceland has the longest standing parliament in the world.

During 1998 there was a passionate and ferocious debate in Iceland lasting close to a year (700 newspaper articles, 150 television programs, 15 town meetings) that resulted in a parliamentary approval. This decision represents as close to informed consent as any such project has ever received. Concerted opposition continues both within Iceland (largely within the medical community) and abroad (a few prestigious scientists and lawyers).

This web site is devoted to providing an international forum for debate and analysis of the anthropological significance of the deCode project. It is jointly directed by Paul Rabinow, Professor of Anthropology at UC Berkeley, and Gisli Palsson, Professor of Anthropology, University of Iceland.

Copyright (C) 1999 by the Library, University of California, Berkeley. All rights reserved.
Last update 4/23/99.