The Estonian Genome Project
The Estonian Genome Project (EGP) is a large population-based biobank that was established with health records and biological samples from large portion of the population for use in biomedical and genetic research to improve the future of the public health care. Special legislative act “Human Genes Research Act” is regulating all aspects of the EGP. From 2005 Estonian government has taken over the funding of the EGP and current task is to collect additional 90 000 gene donors into the database by 2009. Estonian Genome Project has good legal and ethical environment, EGP Foundation is well structured and managed organization with ISO 9001:2000 quality standard. Special legislation and independent ethics committee (www.geenivaramu.ee), public education program and advanced in human genetics are ensuring the strong support of the public. Most recent poll in December 2005 was showing that 39% of population is supporting the idea of the EGP. EGP is on of the founders of the international biobank consortia “Public Population Project in Genomics – P3G”.
EGP is collecting health data through GP practice and they are using all relevant information they have on patient in addition to computer assisted interview, that will last 60-90 min. Health data are structured according to ICD10 and environment, lifestyle, genealogy (3 generations) and variables are recorded.
In addition 50ml of blood are collected and transported chilled to 4-6○ C to the central laboratory in Tartu within 48 h, where DNA, plasma and WBC fractions are separated, transferred into MAPi straws and stored in liquid nitrogen tanks. All procedures are monitored and recorded by LIMS system.
We have legal rights to add data into EGP database from other registries, go back to the patient and ask new informed consent in order to conduct additional diagnostic procedures etc.The first phase of the EGP is over and this was funded mostly by the private capital, now the public funding has taken over and provides for the biomedical field a truly competitive biobank for the new discoveries in human genetics, epidemiology, pharmacogenomics and other areas for the next 25-30 years.