Legislative review
The biobank act
The Biobank Act (688/2012) took effect on 1 September 2013. The objectives of this act are to support research that utilises biological samples from humans, to promote openness in the use of these samples and to secure the protection of privacy and self-determination when processing these samples.
In 2023, the Biobank Act was amended to make the grounds for processing personal data consistent with other research legislation and to comply with the EU General Data Protection Regulation (GDPR). The amendment entered into force on 1 January 2024. It does not apply to samples taken before the amendments’ entered into force.
Link to the unofficial English translation of the Biobank Act
Link to the amendment (approved in 2023), in Finnish
Act on the Secondary Use of Health and Social Data
The globally unique Finnish Act on the Secondary Use of Health and Social Data (552/2019) has been effective since 2019. This act applies to data collected in social and healthcare organisations and governs the secondary use of data for scientific research, innovation and development, and other activities.
The Finnish Social and Health Data Permit Authority, Findata, is the single point of contact for issuing permits for the secondary use of health and social data. Findata also works with registry holders to collect the study data and provides a secure analysis platform, which can be accessed remotely. Individual-level pseudonymized data is available for scientific research conducted by both academic and industry researchers, while anonymous aggregate-level data can be used for a broader set of purposes.