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http://www.corpwatch.org/trac/corner/worldnews/other/291.html Iceland: Parliament Sells Rights to Genetic Code
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By John Schwartz
Washington Post Staff Writer
January 12, 1999=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.=20
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.=20
"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.=20
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.=20
"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.=20
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.=20
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.=20
"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.=20
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.=20
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.=20
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.=20
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.=20
(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.)=20
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."=20
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.=20
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.=20
"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."=20
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.=20
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.=20
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.=20
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.=20
Opponents also argue that the pay-as-you-go research concept damages = the spirit of science, in which knowledge should be freely shared.=20
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.=20
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.=20
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.=20
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."=20
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.=20
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."=20
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."=20
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.=20
"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."=20
Copyright 1999 The Washington Post Company=20
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