Biology Reference
In-Depth Information
and financial reasons had taken the steam out of the project, with the result
that it did not have enough momentum to get past the legal setback discussed
above.
The Icelandic case gives rise to more questions than answers. What is a
fair reward for a genetic resource, when that resource is a human population?
deCODE is a private, American corporation. It was to have rights to sell infor-
mation from the database to other corporations or institutions (with certain
limitations). In this setting, many object to the commercialization and corpo-
rate control of medical data - that is, of what is seen as confidential personal
information (see, for example, Rose
2001
). Who can decide to commercialize
and sell such a resource, and through what process? This case involves deep
ethical and political issues, not least regarding how the decision can be made
to subject the population to this sort of research, and whether the population
can be sensibly said to have agreed or consented to the research (Tables
5.1
and
5.2
).
The Icelandic case shows that in the absence of an international legal regime,
even an affluent society whose parliamentary representatives have discussed
access and benefit-sharing requirements for a particular case in detail can fail to
achieve agreement. The following case is even more extreme, in that it spans a
much longer time frame and involves a highly marginalized, disadvantaged popu-
lation in a developing country.
Table 5.1
Time
Line and Details of Icelandic Case
Date
Details
26/08/1996
deCODE genetics Inc. established in Delaware, USA
late 1996
deCode subsidiary Íslensk erfðagreining established in Iceland. Its primary objec-
tive: to create and operate a centralized health sector database for the whole
nation, and use it on a commercial basis for research in population genetics
Feb 1998
deCODE signs agreement with Hoffmann-La Roche claimed to be worth about
US$200 million. (Ultimately only US$74.3 million was paid to deCODE)
17/12/1998
Act on a Health Sector Database (No. 139/1998) passed by Icelandic parliament
22/01/2000
Íslensk erfðagreining/deCODE granted exclusive operating licence for the Health
Sector Database
14/10/2002
Negotiations between deCODE and Iceland's largest hospital about Health Sector
Database postponed indefinitely
27/11/2003
Icelandic Supreme Court decides that Health Sector Database Act violates
Icelandic constitution's protection of privacy, marking end of Health Sector
Database project
17/11/2009
deCODE files for bankruptcy protection. Íslensk erfðagreining (deCODE's core
business) sold but keeps operating under name of deCODE genetics
