Abstract
North Atlantic between the continents of Europe, America, and the Arctic. Although it may seem an unlikely place for innovation of global significance, the small island nation of Iceland has assumed near iconic status in one field in particular: genomics. Aided by recent advances in genetic technologies and by a bold entrepreneurial vision, Iceland’s genomic innovations have helped transform medical and genealogical information into a new type of global commodity. Furthermore, these innovations—or more precisely, the controversies they have spawned—have helped precipitate the development of global norms governing the relationship between citizens, medical information, markets, and the state. Iceland’s public–private partnership has become a common reference point for other major population genomics initiatives—such as those in Sweden, the United Kingdom, Canada and the United States—but there is often an intriguing gap between what it stands for and what it has become. A November 2005 perspective piece in the New England Journal of Medicine is a good example of how in many accounts of Iceland, important details get lost. In this article, the authors argue that generating the next round of genetic discoveries will require a large number of “health information altruists” to supply health and DNA data and DNA. And they cite the Icelandic government’s ability to construct a “national genomic databank,” in collaboration with deCODE Genetics Inc., as an example of the public’s altruism. This sort of statement is not uncommon in articles written about Iceland, but one problem remains: the country’s Health Sector Database, an international symbol of the new state-led genomics and the biotechnological frontier, was never built. Ten years ago, Kari Stefansson, an Icelandic neurologist turned biotech entrepreneur, co-founded deCODE Genetics and began operating in the suburbs of Iceland’s capital. Eight years ago, Iceland passed the Health Sector Database (HSD) Act, which authorized the construction of the national database. Today, although deCODE continues to announce discoveries, the controversial idea to allow the David E. Winickoff
Highlights
Iceland is a small democratic state of nearly 300,000 inhabitants that sits in the North Atlantic between the continents of Europe, America, and the Arctic.[1]
This article tracks the history of Iceland’s National Health Sector Database, seeking to clarify two Iceland’s public–private critical questions: how could a statute partnership has become a authorizing the transfer of personal medical records to a private corpora- common reference point for tion, without informed consent of individuals, pass through the Icelandic Parliament in 1998? That is, other major population genomics initiatives... [Yet]
The passage of the Health Sector Database Act was a watershed event, as much for the fields of genomic research, venture capital, and bioethics as it was for Icelandic society
Summary
Iceland is a small democratic state of nearly 300,000 inhabitants that sits in the North Atlantic between the continents of Europe, America, and the Arctic.[1]. They cite the Icelandic government’s ability to construct a “national genomic databank,” in collaboration with deCODE Genetics Inc., as an example of the public’s altruism.[2] This sort of statement is not uncommon in articles written about Iceland, but one problem remains: the country’s Health Sector Database, an international symbol of the new state-led genomics and the biotechnological frontier, was never built. This article tracks the history of Iceland’s National Health Sector Database, seeking to clarify two Iceland’s public–private critical questions: how could a statute partnership has become a authorizing the transfer of personal medical records to a private corpora- common reference point for tion, without informed consent of individuals, pass through the Icelandic Parliament in 1998? In December 1998, the Althing passed the Health Sector by journalists and scholars alike.[5]
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