For participants of research studies at Folkhälsan Research Center

In research studies conducted at Folkhälsan Research Center, Samfundet Folkhälsan i svenska Finland rf acts as the data controller. This means that it is responsible for the processing and protection of personal data collected from participants.

The legal basis on which Folkhälsan processes personal data of research participants is typically either the public interest or the data subject’s consent. Participants are informed separately about the applicable legal basis in the project-specific data protection notice or statement, which complements this general data protection notice as well as Folkhälsan’s general data protection information (in Swedish).

In the project-specific data protection notice, participants are informed about the purpose of the research project, what personal data is collected, how the data is stored and protected, and how long it will be retained. Participants may also be informed about potential archiving, further use, and the sharing of data with external parties outside of Folkhälsan, for example, with research collaborators. More information about the processing of personal data is available here (in Swedish).

Almost all Folkhälsan’s research projects have been reviewed by an ethics committee. The purpose of this ethical review is to ensure that the research is conducted in an ethically sound manner, protecting the participants’ well-being, rights, and confidentiality.

Each research project has a designated principal investigator (i.e., person responsible for the study), and usually a separate contact person as well. You may contact either of them if you wish to withdraw from the study or if you have any questions, particularly regarding the data collected about you or your rights in relation to how your personal data is used. Their contact details can be found in the data protection notice and on the research groups’ presentation pages on the Folkhälsan Research Centre website. You can find the Genetics research groups here, and the Public Health groups here. 

You may also always contact Folkhälsan’s data protection officer with any questions related to the processing of personal data via email dataskydd@folkhalsan.fi.