deCODE Genetics and Icelandic society
Dr. Steindór J. Erlingsson
This page was used "as a model for" the 2005 New England Workshop on Science and Social Change
The deCODE story has two very contrasting sides to it. Speaking as a scholar interested in the history and sociology of
science, the integration of
deCODE into Icelandic society, which I detailed at a conference in Paris in 2001
and in a paper
that was published in US Journal GeneWatch in 2002, reveals very well the political aspects
of science. Speaking, however, as an
Icelander interested in democracy and human rights, deCODE's infiltration into Icelandic society has been a nightmare. All the rules that apply in a democratic
society were bent as far as possible to secure everything deCODE needed, which
meant that the full weight of the Government was used even to secure the
company financially, as a detailed Guardian story
revealed in the fall 2002.
The opposition
against deCODE’s plans numbered very few but vocal
individuals, who organised themselves in Mannvernd, Association of Icelanders
for Ethics in Science and Medicine. Mannvernd’s
webpage contains numerous papers and newspaper articles published in English
language outlets and English translations of Icelandic papers. Mannvernd has
almost exclusively focused on the controversial Health
Sector Database Act, of December 1998, which I know, from personal
experience, was written by deCODE. From
the fall of 1998 until the spring of 2000 I worked as Director of the
Information Resource Centre at the US Embassy in
I sat in his office
for about 20 minutes before we started talking, and it gradually dawned on me
that he was talking to a lawyer in the Icelandic Ministry of Health detailing
the changes, article after article, that his lawyers had done on the bill. I was in a shock after this experience, but
it shows in a nutshell how closely the Icelandic Government and the company
worked together. A year later I managed, literally, to get my revenged. In October 1999 the Icelandic Government
hosted an international
women’s conference, whose key note speaker was Hilary Clinton, the First
Lady of the
As I indicated
above Mannvernd has mainly focused on the HSD act, as a result they
mostly ignored the no less controversial Act on
Bio-banks, from the spring of 2000, which has enabled deCODE to collect
blood samples from more than 1/3 of Iceland’s population of 290 thousand
individual.
Being a biologist (BSc) and having written the paper Introduction of
Mendelism in Iceland, it was the spellbinding influence that this gigantic “gene collection”
that has taken place in