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Iceland Sells Its Own Genetic Code

    Iceland Sells Its Own Genetic Code
    Biotech firm buys data of islanders' DNA 
    John Schwartz
    Tuesday, January 12, 1999 
    ©1998 San Francisco Chronicle 

    URL:
http://www.sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/1999/01/12
/MN98155.DTL 

    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. 

    Roche Holding Ltd. has signed a $200 million, five-year deal to develop
new drugs and tests from the data. 

    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. 

    But opponents fear that 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. 

    The plan is to pool detailed genetic, medical and genealogical
information about Iceland's 270,000 residents into
    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. 

    ``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. 

    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. 

    ``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. 

    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. 

    The plan was proposed by a Harvard-educated Icelandic scientist 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. 

    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
    ninth- century Norse people and Celtic seamen has been largely
unchanged, and that gene pool was further
    restricted by bouts of plague, famine and volcanic eruption. 

    ©1998 San Francisco Chronicle  Page A9