-Caveat Lector- Automatic ID News May 1999 -- Vol. 15 No. 5 A country-wide DNA database being proposed in Iceland is heating up the worldwide debate over whether such projects create privacy risks rising to the level of a "Big Brother" government seeking to keep inappropriate files on its population. After nine months of debate, Iceland's parliament has approved a voluntary DNA data collection endeavor to be conducted by a $200 million partnership of the Hoffman-La Roche pharmaceutical firm and the Reykjavik-based deCode Genetics -- a genomics company that researches the connection between genes and illnesses. THe plan is to use Icelanders' DNA characteristics to study -- and perhaps cure -- 12 genetically identifiable ailments. These include four cardiovascular diseases, four psychiatric/neurologic conditions and four metabolic illnesses. deCode has been granted a 12-year monopoly on data marketing rights, and any drugs invented in the process are to be provided free to the island's residents. "The basic idea is to take advantage of a unique combination of qualities that the Icelandic population has and use it to shed light on certain aspects of effective treatments for the future," says Jonathan Knowles, president of La Roche's worldwide research division. "A critical component of this collaboration is the focus on a (specific) population," he explains. "This focus allows us to apply one and the same initiative in genetics in the development of diagnostics, therapeutics and pharmacogenomics." Iceland is unique in that its mainly blond-haired and blue-eyed population of 275,000 people is genetically homogeneous. It was settled about 1,100 years ago by a small group coming from Norway, and the inhabitants remained isolated until World War II. A court fight looms over the privacy issues involved with the DNA database. Many residents welcome the economic and medical benefits that may come about, while others object to the prospect of over-intrusion. deCode says the people have nothing to fear. "We have had unencrypted and highly insecurehealth records in all our healthcare institutions for more than 80 years now, without anyone complaining, without anyone attempting to make indecent use of them," says deCode's Arni Sigurjonsson. "But of course, an effort is now underway to make the records safer, and the planned database project will increase the data security considerably." Sigurjonsson points out that he's been hearing that "some politicians may worry about personal data leaking out about them, harming them in a campaign, but this is not a convincing argument in such a small population where most people know so much about one another anyway." He notes, "No health data has ever been known to harm a politician in this country, [although] an attempt was made in 1930 when some doctors wrote in the newspapers that a controversial minister was insane." There are numerous safeguards in place to protect the population's privacy, Sigurjonsson asserts, stressing that disease data will come from cooperating doctors. "Before we receive these samples, the social security numbers on them are encrypted under supervision of a government institute for data security (the Data Security Commission), so our staff is never able to identify the donors; we neither get the names nor the social security numbers." Participation is voluntary, and people can decline to be tested. An anonymousnational healthcare database being implemented provides additional protection. "This information processing will meet much higher security standards, and the data will be encrypted in three places: first at the original source (e.g., a hospital), then by the Data Security Commission, and finally by deCode Genetics. The encryption keys will be stored in a safe place, and not where the data is stored," says Sigurjonsson. It will not be possible for the government or any other entity to track down people suffering from specific illnesses, he says. "This will be prevented by programming the so-called query-layer in such a manner that you can never look up information about less than 10, or perhaps 20, individuals. Also, a mechanism will be installed to prevent repeated queries that could result in 'zeroing in' on a given individual. Even if a query could return information about an individual -- which it could not -- the personal ID (the social security number) would be encrypted thoroughly and thus unreadable." Sigurjonsson stresses, "deCode will not be selling information about individuals. I strongkly doubt that there would be any market for such information, even if it was available. In this population of 275,000 people, you can get a lot of information about people without paying at all. As for people being denied a job because of genetic makeup, this is not likely, but sooner or later, the legislature may prohibit this." The targeting of potential illness victims for the purpose of denying health insurance is not an issue on Iceland. "We have a single payor system in Iceland, meaning essentially, if not literally, that no citizen can be without health insurance. The insurance fee is collected via texes. No genetic or other information about a person's predisposition to illness can lead to loss of general insurance rights, under any circumstances," Sigurjonsson points out, adding, "If a person has such a disposition, there is all the more reason to keep him or her insured, isn't there?" DECLARATION & DISCLAIMER ========== CTRL is a discussion and informational exchange list. Proselyzting propagandic screeds are not allowed. Substance—not soapboxing! These are sordid matters and 'conspiracy theory', with its many half-truths, misdirections and outright frauds is used politically by different groups with major and minor effects spread throughout the spectrum of time and thought. That being said, CTRL gives no endorsement to the validity of posts, and always suggests to readers; be wary of what you read. CTRL gives no credeence to Holocaust denial and nazi's need not apply. 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