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February 10, 2003 | First, build a bunker. That's where the Estonian Genome Foundation's most important computer rests. It is, the Estonians say, as impregnable as any computer system in the country. "What we really want to do," says EGeen International Inc. CEO Kalev Kask, "is to develop IT infrastructure, test it, and market it globally."

Politics and Security - The Estonian effort includes several fortified informational silos. Identifying details about individual patients will remain off limits to end users of the data From the sound of it, even Kask can't get into the bunker in question easily; access is reserved to two employees at a time, just as in nuclear missile silos, so that each worker can watch the other.

The Estonian IT infrastructure is still being designed, but it will be a mix of custom-written code and outsourced work, potentially including hardware and services from major European and North American IT vendors. It will have strong encryption, and software to de-identify some of the data, removing some facts for larger population studies.

"Once you have the sample, you have no idea who it came from," says Jaak Vilo, EGeen's informatics director. "It has an access code on it. It doesn't have a name or address or anything."

Vilo points out that a custom-made fat-client interface will allow physicians to enter data about their patients — and to contact a patient when an EGeen partner wants more information. "All the message passing is in XML. This was all designed in-house," Vilo says, citing a variety of unnamed applications that assign a unique identifier and bar codes to each patient in the database.

At the end of the process, the data about the patient and his or her blood and genetic makeup will probably live in an Oracle database. But that database, according to Vilo, is not on the network. If a drug company needs to contact a particular patient, the identifying details will have to be retrieved manually and conveyed to the patient's physician. This might not be the most efficient workflow, of course, but it could help to ensure that Estonians remain comfortable with the project.


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