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Good science, good PR

Estonia looks to make its mark by building one of the world's biggest DNA databases

TARTU, Estonia -- The gooey strip of DNA was visible underneath the halogen glow as Dagni Krinka tilted the tube of liquid back and forth under the light at a lab in this northernmost Baltic country.

"This is the part of the work I like best," said Krinka, the head of the laboratory assigned the daunting task of collecting genetic samples from hundreds of thousands of Estonians in the coming years. Then, gazing at the strip, she asked, "Isn't it beautiful?"

It could be much more than beautiful. If this nation of 1.4 million succeeds in its ambitious goal to build one of the world's largest DNA databases, the stringy white gobs in Dagni's test tubes could push international drug development to a new level and bring international recognition to a country still playing catch up after decades of Soviet rule.

Two years after American scientists mapped the human genome, the chemical building blocks that make up humanity's genetic heritage, Estonia is caught up in the race to build large DNA storage banks. In Iceland, the biotechnology company, Decode, has been mining genetic data from 80,000 of that country's population since 1999 and has found gene variations linked to heart disease and osteoporosis. The Marshfield Clinic in Wisconsin began taking DNA samples after patients signed consent forms in September 2002. Projects are also underway in Canada and the United Kingdom.

The goal of these various endeavors is to give scientists and pharmaceutical companies a big population of genetic material that they can scour for disease-causing genes, and use to test out the effectiveness of the medication we take when we get sick.

"It's a resource for basic science," said Andres Metspalu, a biotechnology professor at the University of Tartu in Estonia who began the Estonian Genome Project in 1999. "But with good basic research, it can also lead to good economic benefits."

Money, scientific progress and international recognition are the three factors driving Estonia's plan forward. Since blood sampling began in October 2002, the nonprofit Estonian Genome Project Foundation has collected DNA from more than 3,000 Estonians. Aided by just $4.5 million in private investment, the project hopes to have 10,000 samples by the end of the year. Over the next six years, Estonian officials say, the number should be well into the hundreds of thousands at a cost of more than $100 million.

The project's broad government and public support as well as health records good enough to create vital geneological maps make it attractive to researchers and companies looking for a reliable, accurate database. Adding to the attraction for potential drug developers, Estonia has an especially diverse genetic makeup as a result of hundreds of years of occupation by Russians, Swedes, Danes and Germans.

"You want your results to have wide applicability," said Cornelius Diamond, the chief executive officer of a San Diego-based biotech company, Prediction Sciences.

Diamond's small firm already has signed on to the genome project and recently completed testing two antidepressants on a couple of hundred willing Estonians. By comparing the effectiveness of the pills to the genetic material of the donors, the company hopes to find out why the medication works for one person but not the other.

"We're basically predicting a person's response to the drug," Diamond said.

If Estonia's project is to survive, it needs many more Diamonds, Estonian Genome Project officials acknowledged. The company charged with finding them is Egeen, an Estonian-led start-up in the San Francisco Bay Area that holds the commercial rights to the database.

Kalev Kask, Egeen's CEO and a native Estonian, cut his teeth in the turbulent Silicon Valley biotech industry. He acknowledged the less-than-ideal investment climate currently for biotech ventures, but said the clinical drug trials underway in Estonia are exactly the type of thing that will attract pharmaceutial companies.

"The climate is such that you better come up with something that has short-term economic return," he said.

In addition to money concerns, the project has yielded its fair share of ethical questions as well. After decades under what they call the "Soviet occupation," some Estonians are wary of the Orwellian request to put their most personal information in the hands of a few people.

"The project goes to your very basic being, an area that is very private," said Tiit Veeber, 54, a Tartu businessman. "These couple of people control the data. . . . What will they do with that data? And do they have a right to sell it?"

To stem these concerns, the Estonian government passed a law in 2000 that requires gene donors to sign a contract giving their consent. Anyone caught misusing gene donor information faces criminal prosecution. The law also ensures gene donor information and their blood samples are separated and forbids companies or researchers from taking the information out of the country, ensuring that the data doesn't fall into the wrong hands.

As to whether Egeen has a right to make money off of someone's genetic material, Metspalu said the project's altruistic motives far outweigh any financial ones.

"It's our turn to put something into this collective pool of knowledge," he said. If people make money off of it, "then so be it: This is putting Estonia on the map."

That's no small argument in a country whose other money-making options are the lumber business and an active, but relatively small tourism industry. Indeed, the project seems to fit the ambition and anything-goes attitude of the 12-year-old Baltic country.

Following independence in 1991, the nation's 31-year-old prime minister and a cabinet full of 20-somethings threw out the communists and introduced radical economic reforms that led to double-digit growth rates in the 1990s. With entry into the European Union all but certain following a referendum scheduled for Sept. 14, the country is casting about for ideas that will close the distance between Estonia and its Western European neighbors.

"Estonia has to find a Nokia," said Dr. Eleri Lapsaniit, a common reference to the recognition enjoyed by their mobile phone-making Finnish neighbors to the north. "And the gene project might be our Nokia."

Dr. Lapsaniit, one of about 160 family physicians trained so far by the project to gather genetic data from patients, receives 12 times the $3 the state health care pays her when she works on the project.

In between patient appointments, the 32-year-old physician spends about an hour with each donor in her office in an orange-colored Soviet prefabricated apartment building in Tartu. She asks them questions that range from their family health history to how much rice they eat each week. Since July 1, 27 of her patients have agreed to the project; only two refused to take part.

The Estonian Genome Project "is a gamble; there is no guarantee at all," Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said of efforts like that of Estonia. "They're kind of in a peculiar form of international genetics Olympics. And we don't know who's going to win."

But ask most people in Estonia, and they'll tell you their country is winning already.

"Genetics is something everyone has a connection to," lab chief Krinka said before heading back into the lab to continue another 14-hour day. "We all have genes. That's why I'm not worried we'll fail."

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