Washington Post / By John Schwartz, Washington Post Staff Writer / January 12, 1999
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.
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.
"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.
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.
"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.
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.
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 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.
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.
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.
(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.)
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."
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.
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.
"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."
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.
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.
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.
Opponents also argue that the pay-as-you-go research concept damages the spirit of science, in which knowledge should be freely shared.
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.
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.
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.
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."
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.
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."
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."
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.
"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."
Copyright 1999 The Washington Post Company
