- Iceland has decided to become the first
country in the world to sell the rights to the entire population's genetic
code to a biotechnology company - a move that is highlighting the promise
and risks of the genetic information age.
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- The strikingly uniform DNA of Iceland's
largely blue-eyed, blond-haired populace is expected to provide an invaluable
resource for studying human genetics, leading to fundamental insights into
many diseases, proponents say.
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- "It really is a complete paradigm
shift in medicine," said Jonathan Knowles, who heads research at Roche
Holding Ltd., which has signed a $200 million, five-year deal to develop
new drugs and tests from the data.
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- But the plan is highly controversial
because it will pool richly detailed genetic, medical and genealogical
information about Iceland's 270,000 residents into a set of linked databases
that companies will search for clues into the nature of disease. Although
a majority of Iceland's citizens support the plan, a vocal minority of
scientists and doctors - with support from a worldwide network of like-minded
privacy advocates - have stoked the controversy.
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- "Most doctors and scientists here
in Iceland are in favor of the basic purpose of this project - but find
the proposed solution quite unethical and unrealistic," said Jon Erlendsson,
a Reykjavik-based engineer and writer who believes the database network
will eventually fail because doctors and patients will refuse to cooperate
once its nature is better understood.
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- Opponents fear the database could make
the most private details of individuals' lives public. People with mental
illness or other health problems could be stigmatized, perhaps suffering
job discrimination. Patients may become less willing to divulge personal
information to their doctors. And in a country where some estimates say
that about 10 percent of the population may have been born out of wedlock,
long-held family secrets could leak out.
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- The fight in Iceland is focusing attention
on the potential risks of efforts to mine and refine personal data - efforts
that are also increasingly common in the United States and around the world.
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- "Turning the population into electronic
guinea pigs" should serve as a warning to Americans, said David Banisar
of the Washington-based Electronic Privacy Information Center.
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- Despite the objections, Iceland could
begin collecting blood to obtain the DNA samples within six months, after
a period in which citizens may decline to participate. Precisely how the
blood will be collected has not been determined.
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- The plan was proposed by Kari Stefansson,
a Harvard-educated Icelandic scientist, in part as a way to develop a new
natural resource for a country where unemployment is a chronic problem.
Iceland's parliament, the Althing, approved the plan last month, passing
a law authorizing the database and creating the framework that will enable
a local company, deCODE Genetics, to hold an unusual 12-year monopoly on
data marketing rights.
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- Iceland's population presents a tantalizing
opportunity for those who study genetics because all of that blond hair
and blue eyes reflects one of the most remarkably homogeneous populations
in the world. The original blend of 9th century Norse stock and Celtic
seamen has been largely unchanged, and that gene pool was further restricted
by bouts of plague, famine and volcanic eruption.
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- This comparatively simple set of genes
makes genetic prospecting far less daunting than attempting to track down
faulty genes among the millions of chemical components arrayed along the
human chromosomes in heterogeneous populations like that of the United
States.
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- (It's a little like trying to detect
a single flat note sung by one person while wandering through a public
park in which everyone is singing his own favorite tune: The distractions
of the merengue, the klezmer, the classical and the sea chanteys make it
even harder to find the errant note. A homogeneous population such as
Iceland's, however, is more like a chorus, with most people singing from
the same page -- so it's much easier to discern when one of the singers
is off.)
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- Because Iceland has a strong health care
system with extensive record-keeping, as well as genealogical records that
go back hundreds of years, it offers tremendous potential for ferreting
out the relationship between the genetic and environmental origins of disease,
said Stefansson. Researchers will be able to sift through the data to uncover
medical insights "in a systematic manner," Stefansson said, adding
that "it's going to be a great discovery tool."
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- Those in Iceland supporting the plan
say it strikes a careful balance between the rights of the citizenry and
the needs of science. The unified health database will "improve delivery
of health services. . . . On balance, I think the potential advantages
will outweigh the risks involved," said Solveig Petursdottir, a member
of parliament who voted for it.
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- Opponents of the law cite numerous problems.
Many of them are among the nation's leading scientists and scholars. They
argue their case in Icelandic and English on their Web site, and have formed
an advocacy group, Mannvernd, "to promote ethical standards in medical
research, science and in the biotechnology industry in Iceland" and
to oppose the new law, which the group's Web site says "infringes
upon accepted medical, scientific and commercial standards." They
say that they understand the importance of deCode's work and support earlier
efforts by the company to understand genetic diseases by studying the DNA
of Icelandic volunteers. But the new plan, they say, takes away too much
privacy -- for private gain -- and gives too little back to the nation
and to science.
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- "When you put genealogical information
into the databank and also genetic data, then the databank knows more about
you than you know about yourself," said Tomas Zoega, chairman of
the Icelandic Medical Association's ethics council. "Some look at
it as a fantastic idea. But I think the idea is a scary one."
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- Opponents complain that they still have
not been told how the DNA will be collected, or how much information will
be stored in the database. Those details will be decided by a government-created
committee.
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- The company has promised to collect the
data "anonymously" but uses that word with great nuance, opponents
say. Among most database experts, "anonymous" almost always means
that identifying information will be stripped away. But in this case, the
information directly identifying individuals will be encrypted so that
it cannot easily be read by unauthorized people.
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- British researcher Ross Anderson has
prepared a paper for the Icelandic Medical Association that questions
the notion that anonymity can be protected when so much data is collected.
The company has pledged to program the computers to produce no fewer than
10 records for any query so that the computers can never identify an individual.
But multiple searches can winnow one name out of 10, Anderson said, adding
that no encryption scheme can mask identities when so much personal information
is stored in one place.
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- Opponents also argue that the pay-as-you-go
research concept damages the spirit of science, in which knowledge should
be freely shared.
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- Most important from a doctor's point
of view, Zoega said, is the possibility that "trust between patients
and physicians will diminish and maybe disappear" if people believe
that every fact about them will be entered into the database.
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- As for those who support it, "I
think that those are the people who have not been ill, who do not have
medical records lying about," said Petur Hauksson, a psychiatrist
who chairs the Icelandic Psychiatric Patients Association.
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- Opposition to the database law is, if
anything, even stronger outside of Iceland. Privacy officials of the European
Union have been sharply critical of the database proposal. Researchers
with expertise in genetics and public policy said that the nation's scientific
goal is laudable but that the plan is flawed.
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- Simon Davies, head of the London-based
Privacy International, said the trend toward the collection of more data
at the expense of privacy is a worldwide problem. "A sensible civil
libertarian will say the democratic process failed us. It's all just evaporated
in the past five years."
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- Davies said people are too quick to
accede to arguments based on "economic rationalism" without thinking
about the broader implications. "Thin-lipped accountants have taken
control," he said.
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- Iceland has gone further than other European
nations, Davies said, but it will not be alone for long. "What we're
seeing in Iceland is just the forerunner of a Europe-wide mechanism,"
Davies said. "Wherever you see a bad law, you can bet that the rest
of Europe will sink to that level and integrate."
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- Pharmaceutical scientist Knowles acknowledged
the potential for abuse. "We must do everything possible to ensure
that privacy of individuals is maintained," he said. Because the data
will be used to look for statistical relationships in large populations,
the company has no motivation to examine information about specific persons,
he said. "Individual data is of no use whatsoever."
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- Fears of abuse should be addressed through
legislation, not by restricting the project, Stefansson said. "We
should not let the bad guys dictate" public policy, he said. "We're
not going to let people die simply because it might be abused.
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- "You do not place limitations on
the creation of new knowledge," he said, "you place limitations
on the ways that the new knowledge can be used."
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- Copyright 1999 The Washington Post Company
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