Biology Reference
In-Depth Information
therefore needs to be agreed upon to avoid the exploitation of vulnerable popula-
tions. The cases described here illustrate the
potential
for exploitation, as well as
associated ethical concerns, being the prime motivator for the discussion and
adoption of beneit-sharing requirements.
We shall introduce three relevant cases: The Icelandic deCODE biobank for
genetic research, the sex workers in Nairobi, Kenya, whose samples are used for
HIV/AIDS research, and the Indonesian government's decision to withhold virus
samples from the World Health Organization (WHO) in order to achieve fairer
beneit sharing.
5.2 DeCODE Genetics' Biobank (Iceland)
On 26 August 1996, the research company deCODE genetics Inc. was incorpo-
rated in Delaware, USA. A wholly owned subsidiary, Íslensk erfðagreining, was
established later that year in Reykjavík, Iceland. The company was founded under
the leadership of Kári Stefánsson, an Icelandic medical doctor and (at the time)
professor at Harvard, with US$12 million in funds from American venture capital
irms.
The aim of deCODE genetics is to conduct population genetics research on
common diseases in the Icelandic population, and to use the results for the devel-
opment of treatments and diagnostic tools. The Icelandic population is claimed to
be of great value for genetics research because of the population's (alleged)
genetic homogeneity, good medical records and extensive genealogical records.
2
One of deCODE's key goals was the construction of a population database in
Iceland that would combine health data, genetic data and genealogical data from
the entire population. The database was intended to be the main resource for
deCODE's own research, but it would also be made commercially available to
other researchers, companies and organizations.
In February 1998, deCODE concluded a ive-year agreement with pharmaceuti-
cal giant Hoffmann-La Roche, which was expected to yield more than US$200 mil-
lion for deCODE. According to a Roche press release, Roche would 'provide the
Icelandic people free of charge with pharmaceutical and diagnostics products that
emerge from the collaboration' (Roche
1998
). Two subsequent agreements between
deCODE and Roche conirmed the assurance of free medication and diagnostic prod-
ucts for Icelanders, if developed through the company's collaboration (Potts
2002
).
In order to construct its database, deCODE planned to collect data from medi-
cal records in a new 'Health Sector Database'. The Health Sector Database would
provide the medical data, which would then be combined with two further data-
bases, one containing genetic data and another genealogical data. The genetic
and genealogical databases could be easily constructed, the irst by collecting
2
For a further discussion of the homogeneity of the Icelandic population, see Árnason (
2004
).
