Poster Number
13
Poster Title
Reaching consensus on core outcomes for responsible stewardship of human genomic data in the cloud: A Delphi study.
Authors
Vasiliki Rahimzadeh (Baylor College of Medicine)
Abstract
Background: As global genomic repositories migrate to cloud-based platforms, we lack understanding of what stewardship outcomes matter most to data oversight professionals. Repositories and data stewards require practical, easy-to-use tools to track progress on stewardship outcomes over time, and enable transparent reporting to prospective genomic data contributors. Methods: A three-round Delphi study is in progress to refine a core set of data stewardship outcomes for sharing human genomic data in the cloud. In Round 1, participants rated the importance and feasibility of 35 outcomes across nine categories pertaining to data stewardship of genomic data in the cloud: transparency, accountability, authentication, auditing, security, sustainability, standardization, consent and compliance, and community engagement. Consensus, defined as ≥ 70% agreement across two contiguous rating categories. Results: After Round 1, panelists reached consensus on 26/35 (74.3%) outcomes for importance, 12/35 (34.3%) outcomes for feasibility, and 10/35 (28.6%) outcomes for both importance and feasibility. Additional outcomes were added across the nine categories, and will be re-tested in Round 2. Conclusion: The core outcomes plus measurable criteria will help us to generate a data stewardship outcomes tracker for cloud-based repositories. In future work, we expect to determine the minimum standards that repositories need to achieve these outcomes and test whether transparent reporting influences decisions to share data.