The Commodification of
The Icelandic Health Sector Database
When newspapers around the world reported, “Iceland sells its people's genome, ” it read to many, not least Icelanders themselves, as if Brave New World had finally arrived. It is now clear that the remarkable events on this small Nordic island must be understood as part of a much wider shift. As the big pharmaceutical companies, venture capital, and the state gravitate toward predictive medicine and pharmacogenomics, Iceland maybe the first example of pharmacogenomics in action, but unquestionably it is not going to be the last.
There is a distinct irony to recent developments in pharmacogenomics: This potentially immense innovation, actively pursued by global pharmaceutical companies and venture capital, requires as its precondition a universal health care system. 1 Only the old welfare states have universal health care records. Not for the first time does the relationship between the organizational structures of health care provision and the development of genetics come into visibility and importance. 2 For pharmacogenomics, only the old welfare states offer what they speak of in their depoliticized language as a “good” population. 3
Although the conflict over the Icelandic database broke in 1998, its origins go back to the summer of 1994. Then two Harvard-based clinical neurologists, the Icelander Kari Stefansson and his U. S. colleague Jeff Gulcher, were visiting Iceland to collaborate in a study of multiple sclerosis (MS) with an Icelandic neurologist, John Benedikz. The research project was to look for a possible genetic predisposition to the disease. In “helicopter science” mode, the researchers flew in during the summer, secured as many samples as possible from patients and their families, and then returned to the Medical School at Harvard to do the lab work. 4
Stefansson's ambitions and vision, however, were much wider than search-