Jan. 23, 2001
all of the 270 thousand inhabitants of Iceland
from a few Norse and Celtic settlers, and tracing genealogy is a
national pastime in Iceland. The relatively homogeneous and well-documented
gene pool is a treasure trove for genetic researchers, who are eager
to mine the Icelandic genome for hints on how to treat human disease.
Last year, an Icelandic biotech company called DeCode was granted
an exclusive license to build a data base combining genealogical
records, medical records, and DNA. In our second installment of
this week's series on Iceland, the World's Rebecca Roberts explores
what happens when history and technology collide.
Iceland is a land of
glaciers, volcanoes and violent geothermal activity. (whooshing
sound) That's the original geyser, pronounced GAY-seer in Icelandic.
It was right near this natural wonder that settlers founded a parliament,
somewhere between the years 870 and 930 AD. This blend, of a primitive
untamed land with a population always ahead-of-the-curve is still
a proud part of the Icelandic identity. So when a local company,
Decode Genetics sought public support for a comprehensive health
database of every Icelander, national pride was one of the selling
points, according to Peter Hauksson, a psychiatrist in Reykjavik.
We saw statements that we had such pure genes, and they were superior
to other genes. And maybe some people liked that image, but others
find that rather disgusting.
Hauksson is one of them.
He objects to the fact that information about all Icelanders, living
and dead, is in the database, a combination of medical records compiled
since 1915, anonymous DNA samples, and the country's computerized
genealogical records. Hauksson and other activists formed a group
called Mannvernd, which means human protection. He believes Icelanders
are participating in a massive medical research experiment without
giving informed consent, a basic requirement for research.
We're told that consent would never be informed, because it's
not known how it would be used. But I think it's a minimum requirement
that people be told how the plans are, how it would be used in
general terms so that people understand the consequences it can
have for them and the dangers, and what they will gain.
We would probably not have a health care system as we know it
today, if we would not allow people to use this information without
That's Kari Stephansson,
president and CEO of DeCode. He says informed consent is not only
impractical, it's irresponsible. There's always been a social contract
here, he says, that assumes modern Icelanders will allow their medical
information to be used for the benefit of future generations.
We are privileged to have access to a fairly good health care
system because our parents and their parents allowed us to use
the information generated when they received health care, to put
together or discover new knowledge. And I believe that when we
take advantage of this health care system, it is a right that
comes with an obligation, a obligation to contribute the same.
In response to pressure
from Hauksson's group, the Icelandic government agreed that citizens
can opt out of the medical data base. About 20 thousand individuals
have done so. And about a third of Iceland's doctors are refusing
to turn patients' medical records over to the project. But DeCode's
ongoing research into Iceland's genetic past is already yielding
results. They've issued press releases touting discoveries of genes
related to schizophrenia, osteoarthritis, and psoriasis, to name
a few. But none of it has been confirmed by independent, peer-reviewed
journals, a standard practice in scientific discovery. Kari Stephansson
is not discouraged -- he knows the results of his company's research
will reach way beyond Iceland.
So if you just take intelligent advantage of having on a computer
database the genealogy of the entire nation, you can derive from
it an absolutely unparalleled power in your study of human genetics.
And we have done that.
That power stems from
the ability to combine medical, genealogical, and genetic data with
the very latest in bioinformatics -- the computer manipulation of
the data. Stephansson says it's all leading toward a system of individualized
I know there are those who look at this as being something very
indecent. And very close to abuse of personal information, but
the fact of that matter that for you to be able to benefit from
the concept of individualized medicine, you have to begin to let
yourself be treated as a system.
That system includes
both your current health status --blood pressure, heart rate,etc.,
and your genetic background. This concept of human as data system
worries doctors like Peter Hauksson. He knows the whole world is
This small nation is being followed closely by those who would
like to protect human rights. And also by those who would like
to make money on genetics to see if they can create such a database
in their county too.
Similar databases are
already being discussed in Estonia and Newfoundland. In Iceland,
Peter Hauksson and his group plan to challenge the constitutionality
of the law that created the database. If that fails, Hauksson says,
he will take the case the European court of human rights. For the
World, I'm Rebecca Roberts.
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