Processing of samples and data in the Blood Service Biobank
The Blood Service Biobank processes and stores material with strict respect for privacy.
Biobank operations are regulated by the Biobank Act (Biopankkilaki 688/2012) and are supervised by the Finnish Medicines Agency Fimea. The Blood Service Biobank processes samples and data in accordance with the requirements of the legislation that regulates its operations. The Blood Service Biobank is responsible for storing biobank samples and related data. The purpose of storing and using samples and data for is scientific research aimed at promoting health.
The Blood Service Biobank releases samples and related data only for Biobank studies that have been carefully assessed in accordance with the Blood Service’s operating principles and values, while safeguarding the donor’s privacy.
How is data protection ensured?
Data protection is ensured through precise user agreements and pseudonymisation, i.e. by encoding samples and data so that no individual person can be identified from the material. In countries outside the European Union, adequate levels of data protection are provided through special agreements, as the level of statutory data protection may vary.
Research results and genomic data can also be used in other research than the Blood Service Biobank’s research. When using data for such research, the data is protected through pseudonymisation and released through international databases.
What is stored in the Biobank?
A biobank sample stored in the Blood Service Biobank can be a blood sample, blood product, or part thereof that cannot be used to treat patients. In the Biobank’s laboratory, plasma or serum is separated from the sample, and the DNA is isolated. The sample to be stored may contain blood, blood components, DNA, or cells.
The samples are stored in the Biobank’s freezers or, in some cases, delivered after processing directly to researchers Samples and data collected from the donors can be stored in the Biobank for decades. Samples have already been collected from more than 60,000 blood donors.
The samples in the biobank are accompanied by information about the sample, the sample donor, and the donors state of health, that is necessary for research (i.e., the age and sex of the donor, the type of sample, the date and the time when the sample was taken).
In addition, the results produced by the biobank research, such as information about the individual’s inheritance (genes), are attached to the samples and the sample donor.
The use of genomic information in research and everyday diagnostics is increasing significantly.
Data from other registers can be combined with samples and data from the Blood Service Biobank, if the information is necessary for carrying out biobank research. The data is always combined by a biobank or other data controller, and the data is always encoded before being handed over to research projects. Information from other registers is not stored in the Blood Service Biobank’s register.
Requesting information request from the Blood Service Biobank
You have the right to find out which samples and information about you we store, where the information and samples were obtained, and where they were released to.
You can inquire from the Blood Service Biobank what kind of information about your samples has been determined for the biobank research, and you have the right to receive an explanation of the meaning of the data. A fee may be charged for clarifying the meaning of the data, which is at most equivalent to the costs incurred for providing the report. In general, participation in biobank research does not provide direct personal benefit to the donor.
You can start the information request process by completing the attached Blood Service information request form. Print, fill out and sign the form, and send or bring it directly to a Blood Service unit. We will send you the information requested from the biobank’s register by mail. We will respond to requests for information within one month of receiving them.
• Blood Service information request form
• Read the Blood Service Biobank’s privacy policy