芬蘭FinnGen計畫與人體生物資料庫之規範初探【月旦時論】 試閱
Exploring the Finnish FinnGen Project and the Biobank Act
近年來，芬蘭政府亟力推動健康資料二次利用與精準醫學之研究，FinnGen計畫以公私協力方式，由芬蘭政府與國際藥廠共同出資，利用芬蘭境內人體生物資料庫，收集分析50萬名參與者之基因和健康資料，盼能找出疾病預防及診斷治療之新方法，同時也建立生醫研究之大數據基礎。本文分析介紹芬蘭FinnGen計畫，探討其公私協力之治理、檢體處理及資料串連與個資保護取徑，以及芬蘭人體生物資料庫相關之規範與挑戰。
In recent years, the Finnish government has been actively promoting the secondary use of health data and research in precision medicine. The FinnGen project, through a public-private partnership, is jointly funded by the Finnish government and international pharmaceutical companies. It utilizes the human biobanks within Finland to collect and analyze the genes and health data of 500,000 participants, with the hope of identifying new methods for disease prevention, diagnosis and treatment, while also establishing the big data foundation for biomedical research. This article analyzes and introduces the FinnGen project, its governance model in collaboration with pharmaceutical companies, specimen processing, data integration, and personal data protection. Subsequently, it discusses the regulations and challenges faced by the Finnish biobanks.
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