Text and photo Kaisa Järvelä
Ten Facts about Finnish Biobanks
- The Biobank Act entered into force in Finland in September 2013.
- The internationally progressive act contains provisions on issues such as the acquisition of already existing biological sample data for research purposes and the obtainment of broad consent for new data, so that separately asking participants to give their consent to participate would not be necessary for each individual project.
- In the act, the term biobank refers to any unit into which biological samples are collected and where the samples are stored for future research purposes.
- A total of eight biobanks operate in Finland in connection with different hospital districts, universities and the National Institute for Health and Welfare (THL). Six of the biobanks are regional and collect samples from the hospital districts’ areas, whereas the national biobanks, the THL Biobank and the Finnish Hematology Registry and Clinical Biobank, collect samples from all over Finland.
- Currently, biobanking activities operate mainly on public funding. A future objective is to acquire more corporate funding for the activities to supplement this.
- One of the main objectives of biobanking activities has been to balance the rights of research itself and research participants. Another central objective has been to make data and innovations benefit patients and society faster and more efficiently than before.
- Biobanking activities are primarily based on consent. In practice, this means that research participants give their broad consent for the biobank to process their data and hand them over for research purposes without the need to separately ask for their permission.
- Statements issued by ethics committees have permitted the transfer of old data into biobanks. In such cases, the lack of broad consent has been compensated by either personal or public notifications.
- According to the act, old data may be transferred to a biobank unless someone specifically prohibits this. Even after a mass transfer of data, citizens retain the right to ask whether the biobank contains data about them and, if they so wish, to prohibit the use of this data.
- Even though old samples have been permitted to be transferred to biobanks, any material collected after the Biobank Act entered into force may only be biobanked with advance consent from participants. For this reason, researchers should already start thinking whether they want their data stored in biobanks or not when writing their research plan.
Sources: biopankki.fi and Sirpa Soini, Master of Laws Trained on the Bench, Helsinki Biobank / Seminar on privacy protection in medical and health science research now and in the future, 2016
