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Genomic Data Sovereignty

Meaning

Genomic Data Sovereignty is the ethical and legal principle asserting that an individual or a defined collective, such as an indigenous community, has the fundamental right and authority to control the collection, storage, access, and usage of their own genetic and genomic information. This concept moves beyond mere data privacy to empower the data originator with ultimate governance over who uses their genetic blueprint, for what purpose, and under what specific conditions. It is particularly relevant in the context of commercial genomic testing and large-scale research initiatives where data is often shared across international boundaries.