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.
Research Outputs
- Prictor M, Rychkova M. ‘Recording our genes: Stakeholder views on genetic test results in networked electronic medical records.’ Health Information Management Journal (25 May 2022)
- Presentation to Health, Law and Ethics Network seminar, March 2022
- Conference papers at the Australasian Association of Bioethics and Health Law (November 2021) and the Human Genetics Society of Australia (August 2021)
University of Melbourne Research Team
- Dr Megan Prictor, (Lead investigator), Research Fellow, Melbourne Law School
- Professor Jane Kaye, Melbourne Law School and the University of Oxford
- Associate Professor Mark Taylor, Melbourne Law School
- Professor Wendy Chapman, Associate Dean of Digital Health and Informatics
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