Estonian Biobank

The current cohort size is reflecting the age, sex and geographical distribution of the adult Estonian population: Estonians represent 83%; Russians 14%; and other nationalities 3% of all participants.

Pseudonymised data and/or biological samples are issued for the purpose of research by the Institute of Genomics of the University of Tartu (hereinafter referred to as the Estonian Biobank). This is based on the Human Genes Research Act.

The Estonian Biobank issues the following materials:

• data
  • descriptions of the state of health and lifestyle (phenotype data)
  • genetic data
• biological samples
  • DNA

The steps for issuing the data and/or biological material:

1. Preliminary inquiry

To be able to use the data or biosamples or both of the Estonian Biobank (hereinafter ’the EBB’) for purposes of a scientific research project a preliminary inquiry should be sent via e-mail to releases@ut.ee. The purpose of the preliminary inquiry is to confirm whether the data or biosamples or both required for the planned research are available (in the necessary quantity). 

Download the form for the preliminary inquiry here. 

The Coordinator of Data releases will respond to the preliminary inquiry within 5 business days. The time for processing a preliminary inquiry depends on the precision and complexity of the inquiry.

Based on the response to the preliminary inquiry the researcher can draw up and submit an application to the Scientific Advisory Committee of the Estonian Biobank at the University of Tartu. 

2. Application to   the Scientific Advisory Committee of the Estonian Biobank

The EBB is part of the University of Tartu, which is responsible for ensuring that data of the EBB is only made available to researchers in accordance with the requirements and purposes set out by law. The Scientific Advisory Committee of the Estonian Biobank at the University of Tartu (hereinafter ’the SAC’) is an advisory body that evaluates the expediency and scientific value of the planned research. 

The application must be sent via e-mail to releases@ut.ee.

Download the form for the SAC application here.

The SAC will give a preliminary response to the application within 10 business days as of the date of the meeting of the SAC.

3. Application to the Estonian Committee on Bioethics and Human Research

The Estonian Committee on Bioethics and Human Research (hereinafter ’the EBIN’) evaluates the compliance of the planned research project with data protection requirements, the ethical aspects of it and the adequacy of the measures to be implemented by the researcher to protect the rights of the participants (i.e., the individuals from whom the data or the biosamples or both were derived).  

In case the researcher is only asking for statistical summaries (and not pseudonymized data of the EBB), there is no need to submit an application to the EBIN. 

If the researcher is asking to store and research biosamples of the EBB outside of Estonia, it must be stated in the EBIN application. In addition to a positive evaluation by the EBIN, a permit from the Senat of the University of Tartu is required. The permit of the Senat must be applied for in co-operation with the EBB (i.e., the researcher cannot apply to the Senat on his own).

The EBIN meets 6 times a year. The form for the EBIN application and the dates of EBIN meetings with application deadlines can be found at the webpage of the Ministry of Social Affairs.

4. Application for the issuance of data or biosamples or both from the EBB

After a positive evaluation by the SAC and the EBIN (and the issuance of a permit by the Senat, if relevant), an application for the issuance of data or biosamples or both must be submitted to the EBB via e-mail to releases@ut.ee. 

NB: The decision of the EBIN must be submitted along with the application to the EBB for the issuance of data or biosamples or both. 

Download the form for the application here.

Application to the EBB for the issuance of data or biosamples or both. 

5. Data and Material Transfer Agreement and Data Transfer Protocol 

For the issuance of data or biosamples or both a Data and Material Transfer Agreement will be concluded with the researcher. After the signing of this agreement, the EBB will issue the data or biosamples or both based on a Data Transfer Protocol that must be signed by both parties. 

If the researcher is located or operating outside of the EU/EEA, the Data and Material Transfer Agreement will include Attachment B containing standard contractual clauses for the transfer of data to third countries. 

6. Price list

The above set price list intended to cover the direct costs borne by the Estonian Biobank associated with the issuance of biomaterial and data. 
The prices do not include the shipping costs of biological materials. 
*20% VAT is added to the price 

The price for using the HPC server depends on the required computing power; the costs can be calculated here.