Human Genome Data Sovereignty Act GenArchive Passes in Iceland: Personal Genome Data Ownership Belongs to Individuals
Iceland's parliament passes the world's first genome data sovereignty act GenArchive, establishing that individuals have full ownership of their genome data, and research institutions must obtain explicit authorization and share commercial benefits.
Iceland's parliament passed the GenArchive Act on July 22, becoming the world's first law to explicitly establish personal genome data ownership. The act stipulates that personal genome data is personal property, and any institution storing, analyzing, or commercializing it must obtain the data subject's explicit informed consent. Research institutions generating commercial revenue from genome data usage must share no less than 15 percent of profits with data subjects.
Iceland has long been a hotspot for genetics research due to its relatively isolated population gene pool. deCODE Genetics has accumulated genome data from over 500,000 Icelanders over the past 20 years. The GenArchive Act requires the company to renegotiate data usage agreements with all data providers within 12 months. deCODE CEO Kari Stefansson stated: "We support the data sovereignty principle and have begun communicating with affected participants."
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