Code of conduct
Legal points of view
The implementation of the research project is based on the cooperation agreement between the parties and the approved research plan. The Coordinating Ethics Committee of the Helsinki and Uusimaa Hospital District has evaluated the project. FinnGen research project is based on samples from Finnish biobanks and data from national health registers. The study applies the permissions to utilise the register data for research purposes from national authorities. The research project complies with existing legislation (in particular the Biobank Law and the Personal Data Act) and will conform to any new laws. The EU Data Protection Regulation that will come into force in May 2018 has also been taken into account when planning the project.
University of Helsinki is responsible for the FinnGen research project and the official data controller of the study. Each sample is coded so that individuals can not be identified when biobank samples are used for FinnGen research. Direct identification of persons (eg name or personal identity number) has been replaced by a research code (eg FGid458793x). It is therefore not possible for researchers to identify individuals from large research material.
A key feature of the project is that an individual’s data will not be released. Instead, de-identified data is analysed within a secure, monitored environment. In FinnGen (as in all biobank projects), the participants' data are processed in a secure environment with controlled access rights. The FinnGen study has a designated data security and data protection officers who supervise these processes. We have also asked external parties to evaluate the data privacy and security of the project. The risk of data misuse is very small.
Ethical and societal perspectives
A multidisciplinary working group will be appointed to consider the various ethical and societal issues that arise in the framework of this study. The aim is to involve biobank sample donors in research activities and to develop best practices for public-private cooperation research projects. The working group is led by Development Manager Sirpa Soini.