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The Human Genomes Platform Project (HGPP) is an Australian nationally-funded collaborative research project aiming to enhance capability for securely and responsibly sharing human genomics research data. National and international connectivity will maximise the utility of these sensitive and valuable assets. A major challenge to human genome data sharing is navigating restrictions on secondary use. Decisions on how and to whom to grant access to data require significant human effort by DAC (Data Access) Committees. This manual approach is slow and burdensome. The aims of the DAC Automation sub-project are to explore a new data access request and approval paradigm driven by automation for the national human genome research community. The initial focus of the DAC Automation sub-project team was a discovery and recording phase to define the current state of data access requests and data sharing agreements within the community, the set of problems that need to be addressed, and key sub-project areas and their (likely) requirements. The DAC Automation Discovery Phase Report (this document) records: the current state of processes and tools for data access requests and data sharing across the community, national community needs, gap analysis, and identification of international projects with potential solution components for piloting in later project stages.This document will be the reference for planning the pilot for a system that addresses prioritised requirements to create a Minimum Viable Product (MVP). The Australian human genome research community has many connections to consortia in Europe and the USA, but retains the need to work independently, according to our own national requirements and guidelines. International readers, particularly those who are outside Europe and the US, may find this discovery report useful for reference in their own human genome research data sharing program efforts.
Ethics, Data Access Application, BAM, Data Sharing, Governance, Data Access Control, Research, Data Policy, DUOS, Human Genomics, Technology platform, Automation, Data Access Requests, REMS, Technology Infrastructure, Data Access Committee, Principal Investigator
Ethics, Data Access Application, BAM, Data Sharing, Governance, Data Access Control, Research, Data Policy, DUOS, Human Genomics, Technology platform, Automation, Data Access Requests, REMS, Technology Infrastructure, Data Access Committee, Principal Investigator
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