Poster ID
P-15
Poster Title
From Consent to Release: A Semi-Automated, Consent-Aware Workflow
Authors
Maxime Hebrard¹,², Ignatius Jeppe Menzies¹, Peter Louka¹, Tim Kallady¹, Rishi Israni¹, Katherine Champ¹, Filippo Ammazzalorso¹, Andrew Patterson³, Oliver Hofmann³, Leonard Goldstein¹,⁴, Sarah Kummerfeld¹,⁴
¹ Garvan Institute of Medical Research, Darlinghurst, NSW, Australia
² PRECISE: Precision Health Research, Singapore, Singapore
³ University of Melbourne, Parkville, VIC, Australia
⁴ School of Clinical Medicine, UNSW, Sydney, NSW, Australia
¹ Garvan Institute of Medical Research, Darlinghurst, NSW, Australia
² PRECISE: Precision Health Research, Singapore, Singapore
³ University of Melbourne, Parkville, VIC, Australia
⁴ School of Clinical Medicine, UNSW, Sydney, NSW, Australia
Abstract
Background: Responsible reuse of human genomic data requires three governance steps: i) recording the scope of the participant’s consent, ii) evaluating who may access that data and for which purpose, and iii) delivering the right files to the approved researcher. In current workflows these steps live in disconnected systems, such as spreadsheets and email approvals; they rely on manual interventions such as visual checks and file transfers; and they break the chain of custody between individual consent and released datasets, forcing custodians to reinterpret consent at each release and introducing high risk of human error.
Approach: Within the Australian BioCommons GUARDIANS program (guardians.biocommons.org.au), enabled by NCRIS investment via Bioplatforms Australia, the Garvan Institute has integrated three open-source platforms into a consent-aware release workflow. CTRL, a dynamic e-consent portal, stores each participant's current consent and data use choices with full version history. Consent-form questions and answers can be tagged with GA4GH Data Use Ontology (DUO) and SNOMED CT codes, unlocking machine-readable interpretation of data use; the team is also exploring complementary ontologies to broaden coverage across use cases. REMS captures data access committee (DAC) decisions and publishes approved data use targets in the same vocabulary. Elsa Data operationalises release: for each approved request, it queries CTRL for the live data use state of every candidate participant, compares it to the REMS-approved data use, and includes a participant's files only where the two match. Authentication flows through the Australian Access Federation, so the download is bound to the researcher identity approved by the DAC.
Data story: A participant registers in CTRL and permits not-for-profit and university use but declines commercial reuse. A researcher lodges a request in REMS for an academic rare-disease study. On DAC approval, Elsa Data resolves the entitlement against live CTRL state and constructs a release containing only files from participants whose data use codes are compatible. If the participant later revokes consent, the next release excludes their data automatically, no need for a human to read through the participant list.
Availability: All three platforms are open source:
CTRL (github.com/Garvan-Data-Science-Platform/ctrl); REMS (github.com/CSCfi/rems); Elsa Data (github.com/elsa-data/elsa-data). Contact: ctrl@garvan.org.au
Approach: Within the Australian BioCommons GUARDIANS program (guardians.biocommons.org.au), enabled by NCRIS investment via Bioplatforms Australia, the Garvan Institute has integrated three open-source platforms into a consent-aware release workflow. CTRL, a dynamic e-consent portal, stores each participant's current consent and data use choices with full version history. Consent-form questions and answers can be tagged with GA4GH Data Use Ontology (DUO) and SNOMED CT codes, unlocking machine-readable interpretation of data use; the team is also exploring complementary ontologies to broaden coverage across use cases. REMS captures data access committee (DAC) decisions and publishes approved data use targets in the same vocabulary. Elsa Data operationalises release: for each approved request, it queries CTRL for the live data use state of every candidate participant, compares it to the REMS-approved data use, and includes a participant's files only where the two match. Authentication flows through the Australian Access Federation, so the download is bound to the researcher identity approved by the DAC.
Data story: A participant registers in CTRL and permits not-for-profit and university use but declines commercial reuse. A researcher lodges a request in REMS for an academic rare-disease study. On DAC approval, Elsa Data resolves the entitlement against live CTRL state and constructs a release containing only files from participants whose data use codes are compatible. If the participant later revokes consent, the next release excludes their data automatically, no need for a human to read through the participant list.
Availability: All three platforms are open source:
CTRL (github.com/Garvan-Data-Science-Platform/ctrl); REMS (github.com/CSCfi/rems); Elsa Data (github.com/elsa-data/elsa-data). Contact: ctrl@garvan.org.au
Digital Poster