BioWorld International Correspondent
BORNHEIM, Germany - The Parliament of the Republic of Estonia passed a law on building up a national gene bank.
The Estonian Genome Foundation (EGF) expects 1 million volunteers out of the country's 1.4 million inhabitants to participate during the next five years. The project will help discover genes that cause and influence common diseases, and help to practically implement genomic medicine on a large scale, according to EGF.
The project also is designed to increase international competitiveness of the Estonian economy. Estonia's president signed the law late last month, EGF supervisory board member Andres Metspalu told BioWorld International.
Up to 100,000 single nucleotide polymorphisms (SNPs) will be determined for each donor, EGF said. A SNP is one single genetic letter difference in the sequence of a gene. Such a SNP may determine, for example, the probability of Alzheimer's disease striking before the age of 50 or after the age of 90. SNPs also influence whether a drug may work in one person and not another. Screening a large number of individuals for their SNPs and correlating SNPs with phenotype will help lead to discovery of SNPs responsible for diseases.
Data collecting for the gene bank has two branches. Health data mapping will ascertain information on health status, genealogy and lifestyle for description of phenotype. For the other branch, genotyping, volunteers will give blood samples for DNA extraction. Data will be safety coded and cannot be attributed to an individual, EGF said. Gene donors, however, have the right to know their genetic and phenotypic data, except data on their genealogies.
It is also defined by law that "the gene bank may be used only for scientific research and treatment of illnesses of gene donors, public health research and statistical purposes. Use of the gene bank for other purposes, especially for collecting evidence in civil or criminal proceedings or surveillance, is prohibited."
Data may be exported, but in most circumstances the DNA has to stay in Estonia, Metspalu said. "All operations on the material have to be done here. One of the reasons to start this genome project was to initiate founding of biotech companies in Estonia. To run the project, more companies are needed that make bioinformatics or genotyping, for example. And we expect some of the bigger players to settle here."
Creating new jobs is a major goal of the project, he said.
Revenues for the gene bank will be derived by selling various services or licenses. EGF sees different research institutions and bioinformatics, biotechnology and pharmaceutical companies as major customers.
The implementation of the project is estimated to cost about 1.5 billion Estonian kroons (US$90 million), according to EGF. Metspalu said the majority of funding is expected to come from private resources such as biotech and pharma companies.
Sampling will be done mostly by nationwide primary health care. A pilot project with health data and blood sample collection is expected to start in the summer, said Andres Rannamde, a member of EGF's management board.