The Estonian Genome Center is a research institute of the University of Tartu (EGCUT) with a population-based, prospective and longitudinal biobank the Estonian Biobank. The EGCUT maintains and manages the biobank by storing the samples of DNA, plasma and buffy coat, and periodically renewing and updating the health information. The biobank consists more than one million biological aliquots and health records from nearly 52,000 participants representing 5% of Estonia’s adult population. In addition to the well-described phenotypes, the Estonian Biobank has ~25,000 participants being genotyped with different Illumina microarrays, and nearly 100 human exomes and 100 full human genomes have been sequenced as of 1 April 2014.
The entire EGCUT database makes it possible to carry out research to find links between genes, environmental factors, lifestyle habits and their contribution to complex diseases or other traits. An aim of the EGCUT is to facilitate the development of personalized medicine in Estonia by implementing the genomic data among all other medically relevant information of the patient in medical care. The biobank is actively used by researchers worldwide – with hundreds of projects underway. Data sharing is flexible and all legal and societal issues of biobanking are well covered by the special law: The Human Genes Research Act of Estonia. The funding for the Estonian Biobank is provided from the Estonian Government through the budgets of the Ministry of Social Affairs and the Ministry of Education and Research, and various international grants from European Commission and elsewhere.
One of the big tasks the Estonian Biobank currently has is to be a training center for the new establishing biobanks in Eastern Europe. The Estonian Biobank is a partner of a large European consortium BBMRI, which is aimed to prepare the construction of a pan-European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI; www.bbmri.org) for biomedical and biological research in Europe and worldwide, building on existing infrastructures, resources and technologies, specifically complemented with innovative components, and properly embedded into European ethical, legal and societal frameworks. The goal for European healthcare and medical research is to benefit from this project, and ultimately, the health of the citizens of the European Union together with expanding and securing competitiveness of European research and industry in a global context, especially in the field of medicine and biology.
The presentations of Estonian Biobank will focus on the experience of Estonian biobank and cover the following topics – legal and ethical aspects of biobanking, recruitment, logistics, and IT in implementing the outcomes of genetic research data to the benefit of personalized medicine.