Characterizing core outcomes of responsible stewardship for human genomic data in the cloud

We present findings from a scoping review of the genomic data sharing literature used to inform a core outcomes set for responsible data stewardship in the cloud. Genomic and related health data stemming from government funded research have undergone mass migration to the cloud where they can be more securely stored, accessed, and analyzed within shared computing environments. While this migration reflects a shift in privacy and security infrastructure for cloud-based repositories as oversight becomes more globalized, it also necessitates new data stewardship responsibilities to align authorized data access with ethical data use. Responsible data stewardship refers to the ethical and secure management, use, and protection of data to ensure its accuracy, privacy, integrity, and appropriate access throughout its lifecycle. Practicing responsible data stewardship is therefore one axis by which repositories can demonstrate trustworthiness in their data access and management practices. We searched the cloud governance and data sharing literature indexed in Web of Science as well as Elicit using the scoping review approach by Arksey and O'Mally. A total of 46 articles met our inclusion criteria, to which we applied a deductive, thematic content analysis to generate relevant outcome domains as well as individual core outcomes of cloud-based data. Our qualitative synthesis resulted in 35 individual core outcomes organized under 9 core domains: transparency, authentication, auditing, accountability, security, sustainability, standardization, consent and compliance, and community engagement.