Center for Medical Ethics and Health Policy Staff Publications

Language

English

Publication Date

5-6-2026

Journal

BMC Medical Genomics

DOI

10.1186/s12920-026-02382-x

PMID

42092915

PMCID

PMC13317215

PubMedCentral® Posted Date

5-6-2026

PubMedCentral® Full Text Version

Post-print

Abstract

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.

Keywords

Humans, Cloud Computing, Computer Security, Genome, Human, Genomics, Information Dissemination

Published Open-Access

yes

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