> URL: > http://www.sfgate.com/cgi- bin/article.cgi?file=3D/chronicle/archive/1999/01/= > > 12 > /MN98155.DTL=20 > > 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. > > =A91998 San Francisco Chronicle Page A9=20 > > > <<<<<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> > The address for any administrative command like unsubscribe, > subscribe or help is: > > [EMAIL PROTECTED] > > The WWW list archive is available at > > http://gen.free.de/archives.html
Iceland Sells Its Own Genetic Code Biotech firm buys data of islanders' DNA=20 John Schwartz Tuesday, January 12, 1999=20 =A91998 San Francisco Chronicle=20 URL: http://www.sfgate.com/cgi-bin/article.cgi?file=3D/chronicle/archive/1999/01/= 12 /MN98155.DTL=20 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. =A91998 San Francisco Chronicle Page A9=20 <<<<<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> The address for any administrative command like unsubscribe, subscribe or help is: [EMAIL PROTECTED] The WWW list archive is available at http://gen.free.de/archives.html ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com
