Recording our Genes: Electronic Medical Records, Genomics and the Law

Project details

Australia has seen rapid growth in both genomic testing and networked electronic medical records (EMRs) including the controversial My Health Record. Adding genomic test results to networked EMRs is a national policy priority but we do not know how to regulate to support patients’ trust. This project will address this gap through empirical research and legal analysis. A clearer understanding of patients’, families’ and clinicians’ concerns, needs, and privacy expectations will inform resolution of emergent legal issues relating to confidentiality, control and consent: developing recommendations for trustworthy legal and governance measures to support the integration of genomic results into EMRs.

University of Melbourne Research Team

Our Partners

  • Ms Tiffany Boughtwood, Australian Genomics Health Alliance
  • Mr Paul Fennessy, Manager, Genomics & Health Technology, Victorian Department of Health
  • Professor Diane Nicol, Professor of Law and Director, Centre for Law and Genetics, University of Tasmania
  • Ms Lynda O'Brien, Senior Legal Counsel, Gen V, Murdoch Children's Research Institute
  • Dr Danya Vears, Senior Research Officer, Murdoch Children's Research Institute

Research Assistant

  • Maria Rychkova, Melbourne Law School

Funding (2021)

University of Melbourne Early Career Researcher Grant
Dr Megan Prictor