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Future-proofing genomic data and consent management: a comprehensive review of technology innovations

Genomic information is increasingly used to inform medical treatments and manage future disease risks. However, any personal and societal gains must be carefully balanced against the risk to individuals contributing their genomic data. Expanding our understanding of actionable genomic insights requires researchers to access large global datasets to capture the complexity of genomic contribution to diseases.

Citation:
Oliva A, Kaphle A, Reguant R, …….. Breen J, Buckberry S, Guennewig B, ……. Brown A, Cowley MJ, et al.  Future-proofing genomic data and consent management: a comprehensive review of technology innovations. GigaScience. 2024;13.

Keywords:
Decentralized systems; dynamic consent; genome data privacy; self-sovereign identity; trust model

Abstract:
Genomic information is increasingly used to inform medical treatments and manage future disease risks. However, any personal and societal gains must be carefully balanced against the risk to individuals contributing their genomic data. Expanding our understanding of actionable genomic insights requires researchers to access large global datasets to capture the complexity of genomic contribution to diseases.