Rubén Armañanzas
Over 30 pilot programs worldwide are now sequencing newborn genomes, collectively screening tens of thousands of infants. Yet no governance framework exists to protect the resulting data from breaches, commercial exploitation, or institutional misuse. I argue that whole genome sequencing at birth should be recognized as a universal right, what I term genomic sovereignty . Under this model, each newborn’s genome is sequenced shortly after birth and delivered to the parents on an encrypted physical device, a genomic birth certificate, with no institutional copy retained. The sequencing facility purges its records upon delivery, and zero-knowledge proof protocols ensure that no traceable metadata links the genome to the child’s identity. Parents serve as temporary custodians until the child reaches adulthood and assumes full control over the data, including the right to re-encrypt, seek clinical interpretation, participate in research, or decline engagement entirely. This approach eliminates the centralized databases that have proven vulnerable to breaches and commercial exploitation, as demonstrated by recent high-profile data breaches and corporate bankruptcies in the commercial genomics sector. The genome’s lifelong value as a health resource, one that appreciates as medical knowledge advances, means that data acquired at birth will become increasingly informative over decades. Health systems already administering newborn screening are the natural stewards of this initiative, ensuring equitable access regardless of geography or income. As sequencing costs approach $100 per genome and converge with what public health systems already spend on traditional newborn screening, the economic and ethical case for universal implementation becomes compelling.