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. Last Updated: 07/27/2016

Nationwide Gene Bank to Be Set Up in Estonia

TALLINN, Estonia — Estonia has given initial approval to plans to set up one of the world’s first nationwide gene banks, where detailed genetic codes of two-thirds of the population would be stored, said the government Wednesday.

The depository, which would take five years and $200 million to complete, would help scientists link genes to diseases and enable Estonians to benefit from personalized, gene-specific drugs in the future, said supporters of the proposal. Scientists believe breakthroughs in the study of genes, which make up the blueprint of how the human body develops, could dramatically improve knowledge of illnesses and open the way for revolutionary new medications. This former-Soviet republic with a population of 1.4 million says its small size makes it easier to collect the large number of gene samples required by researchers. Iceland, which has 270,000 people, is the only other nation with such a project.

The Cabinet approved the project Tuesday and sent a bill for legislative approval. The bill would limit access to the gene data to researchers and forbid access to employers or insurance firms, government spokesman Priit Poiklik said.

The project should get under way in 2001, when people will be asked to give blood and provide medical histories. Participation will be voluntary, unlike in Iceland where people are automatically included if they don’t explicitly refuse.

In recent surveys, 90 percent of Estonians said they would take part, meaning the genes of more than 1 million people would be stored, said Andres Rannamae, head of Estonia’s Genome Foundation, which drew up the project details. Information about the project will largely be provided via news media and family doctors.

At least half of the funding is expected to come from commercial biotech firms, intending to buy rights to access Estonia’s storehouse of gene research, although individual records would be off-limits. Other funds would be provided by the government.

Despite strong privacy rules in the draft bill, critics warn of the possibility that genetic information, indicating someone is prone to a debilitating illness, could be leaked to employers or insurance companies.

Others argue that costs are too high and the money would be more effectively spent on improving the nation’s ailing post-Soviet medical system or funding advertising campaigns to stem high alcohol and cigarette use.

"Estonian living and health standards aren’t so high that we can afford such expensive projects as this,’’ Tiina Tasmuth, a medical professor at Tallinn’s Technological University wrote recently in Estonia’s Postimees daily.

Many Estonians, who say their country hasn’t developed a strong enough industrial base since regaining independence from the Soviet Union in 1991, hope the gene-bank program will spur the growth of a dynamic biotechnology sector.

"With other companies that will spring up around this project, the biotech industry here could boom by tenfold in just a few years,’’ Rannamae said.

Advocates also say any costs or potential risks are outweighed by the benefits and by the chance for Estonia to leave its mark.

"This is a rare chance for Estonia to make scientific history,’’ said Rannamae, of the Genome Foundation.

http://www.genomics.ee/genome/ Estonian Genome Foundation