The Current Status of Policy for Genome Medicine in Finland

Abstract

Japan needs to develop a health policy for utilization of medical informatics in accordance with promotion of genome medicine. Finland, which is a country highly advanced in terms of informatics, would be a good reference for Japan to develop the legal and social infrastructure for utilization of medical informatics. We visited the relevant Finnish organizations to collect information regarding laws and regulations, research infrastructure, and patients’ opinion on utilization of the health data. We focused on three topics in Finland: Genome Act, Act on Secondary Use of Health and Social data, and FinnGen project. We have three suggestions based on the results. First, we can consider using the existing research infrastructure including biobanks. We have a variety of biobanks in Japan; however, the researchers cannot utilize the existing samples or data because of the complicated sharing process. A system for matching the available sample or data with the researchers may be useful. Second, when adding the clinical information or other registry data to the existing sample at the biobanks, researchers may use the biobank consent as justification for secondary use of the patient’s healthrelated data. Third, we need IDs connecting clinical and research data/samples. This can optimize the data and sample collection process, which is currently timeconsuming. We need further research on the current situation in the U.S., which has already implemented genome medicine as a clinical practice, to provide recommendations for Japanese policy on genome medicine.