BioWorld International Correspondent
BERLIN The national Genome Project officially started operations in Estonia this month, an official of the Estonian Genome Foundation (EGF) said during a workshop here last week.
Researchers now are preparing for a pilot phase of the project, which aims at building a national gene bank. This gene bank is expected to be based upon gene probes and health data from 1 million volunteers from the country’s 1.4 million citizens. (See BioWorld International, Jan. 3, 2001.)
Initiators expect the gene bank to match genetic, environmental and lifestyle influences on common diseases. Thus, it could enable physicians to offer individual therapies to their patients. “Gene donors can receive early warning of possible health risks as well as take advantage of new genetic drugs,” the EGF said.
The project could mean improvements in both health and the economy in Estonia.
The future Estonia is pictured as a knowledge-based society, with research and development and innovation being the basis of growing competitiveness and quality of life, the Estonian minister of education, Tõnis Lukas, said.
“Estonia is too small to build an economy on commodities and things like that. Science is the only option to develop our society upon,” Lukas told BioWorld International.
Biomedicine is one of three key areas in Estonia’s research and development strategy.
As a nonprofit organization, the EGF is the owner of all intellectual property generated in the national gene bank. The EGF founded EGeen Inc. to translate science into economic improvement in Estonia.
EGeen has an exclusive agreement for the commercial use of the database and will serve as an investment vehicle, the EGF said. EGeen is located in San Francisco and has a subsidiary in Estonia.
EGF expects EGeen to fuel development of infrastructure for the genome project in Estonia. “[Since] DNA has to stay in Estonia, all genotyping will be done in Estonia. This means new jobs. New labs will be built, new companies founded,” said Andres Metspalu, a member of the EGF supervisory board.
EGeen is expected to close its first round of financing soon, US$5 million to $7 million of venture money raised in the U.S., Metspalu said. US$2.5 million of this is planned to fuel the genome project’s pilot phase, which includes 10,000 patients in three counties of Estonia. Infrastructure for this pilot study is under preparation.
The rest of the funds will fuel development of EGeen. At a later stage EGeen is expected to raise revenues by partnerships with pharmaceutical companies related to pharmacogenomic research, target discovery and validation, and health care informatics services, as well as collaborations or joint ventures with pharmaceutical or biotech companies. EGeen is expected to become a pharmaceutical company itself, Metspalu said.
“EGeen has to pay up to some EUR350,000 as an annual fee to the EGF. When the shares of EGeen [will be publicly offered] the foundation will get 2.5 percent of the revenues. If EGeen gets royalties or licensing it has to share [about 4 percent of] this profit with the EGF,” Metspalu said.
EGF collects the data and blood samples, extracts DNA and makes the database. Thus Estonian society participates in the money EGeen shares with the EGF.
“VC investors have accepted that they have to pay a toll to each person, at the end of the day,” Metspalu said, adding that on the other hand citizens “have to be altruistic to donate the blood without getting paid directly.”
Estonia has set up a defined legal and ethical framework for its national genome project. Volunteers give data and blood for genotyping under informed consent. Data are safety coded and cannot be attributed to an individual, EGF said. Only gene donors have the right to know their data, except on their genealogies. They also may opt to not know their data. Use of the gene bank for purposes other than scientific research, treatment of diseases of gene donors, public health research and statistical purposes is a criminal offense under Estonian law.
A recent poll on the project showed that 63 percent of Estonians knew about the project, and “out of these, 42 percent were ready to participate and 6 percent were against the project. The rest wanted to get more information before they would decide,” Metspalu said.
Latvia Starts Getting Own Program Under Way
Estonia’s southern neighbor, the republic of Latvia, also plans to explore genomes of its citizens in a national project that aims to translate health and gene data into improved health and economic conditions.
The country is preparing a law on genome research. The Latvian Parliament is expected to decide on the law this spring, the medical manager of the Latvian genome project, Valdis Pirags, said.
The main objective of the 10-year project is to “create a national system of genetic information and data processing; to collect a representative amount of genetic material for genotyping the Latvian population; and to compare genomic data with clinical information and the information available about specific pedigrees,” the biomedical research and study center of the University of Latvia explained.
Latvian researchers plan to start their genome project with case-control studies in areas including diabetes, cardiology and oncology.
“We will start with an approach to check already-known genes in the Latvian population,” Pirags said.
The researchers match the genes with health information from the country’s medical centers. “Latvia is so small that all patients are treated in [a few] medical centers [each specialized on certain diseases], so we will have very good health descriptions,” Pirags said.
“When we get enough funding, we will expand the database to the whole population, then maybe we will have a tool to hunt for new genes,” Pirags said.
The project is being fueled by an approximately EUR200,000 state grant. If the genome research act passes the Latvian Parliament, Pirags expects the state funds to be increased to about EUR2 million.
The Latvian genome researchers are in negotiations with private investors. “But we decided not to start private partnerships until the genome research law is accepted by the Parliament,” Pirags said.
Economically, Pirags said the project would help Latvia find its place in the European Union, which Latvia wants to join. “We are not exporters of raw materials, timber or fish. But we want to export our knowledge. We want to be a high-tech country in the age of Europe.”