Genomic Data Custodianship Practices in Australian Clinical, Research and Public Health Settings

  • Cannizzo, Fabian (Primary Chief Investigator (PCI))
  • Petersen, Alan (Chief Investigator (CI))
  • Newett, Lyndsay (Chief Investigator (CI))
  • McCarthy, Alice (Chief Investigator (CI))
  • Luo, Yingyi (Chief Investigator (CI))
  • Croy, Samantha (Chief Investigator (CI))
  • Richards, Chris (Chief Investigator (CI))

Project: Research

Project Details

Project Description

This interview-based research project will document genomic data custodianship practices across research, clinical and public health settings across Australia. By developing models for governance practices occurring in real-world settings, it will assist in the development of a more trustworthy data governance framework.
Professor Margaret Barret presenting at the National Music Teacher Mentoring Program Conference (Photo courtesy of AYO)This one-year research project builds on research conducted for the LINEAGE Consortium. LINEAGE (Law, Sociology and Ethics in Data Governance for Genomics) is a national MRFF project aiming to address emerging ethical, legal and social issues in governance of clinical genomic datasets and improve health. This project will help the LINEAGE Consortium and policy-makers ensure that new data governance framework proposals are sensitive to the realitiesof data governance practices, thereby improving genomic research and related health outcomes.
This project is the first to classify organisational practices of data governance, bringing a sociological perspective to scientific and medical policy fields.
Short titleGenomic Custodian Project
AcronymGDCP
StatusActive
Effective start/end date6/01/25 → 19/12/25
  • 1 Review Article