Recording our genes: which way forward for Australian law on genetic data and electronic medical records?

Dr Megan Prictor1, Maria Rychkova1, Mark J. Taylor1, Jane Kaye1,2, Wendy Chapman1, Tiffany Boughtwood3,6, Paul Fennessy4, Dianne Nicol5, Lynda O’Brien6, Danya F. Vears1,6.

1Melbourne Law School, the University Of Melbourne, Carlton, Australia, 2University of Oxford, UK, 3Australian Genomics, Australia,4Victorian Department of Health, Australia 5University of Tasmania, Australia, 6 Murdoch Children’s Research Institute, Australia

Purpose: This presentation will report on the findings of a project examining the legal framework for integrating genomic test results into networked electronic medical records (EMRs).

Nature and scope:  Incorporating genetic information into networked EMRs is a national policy priority to benefit care coordination and clinician decision-making. Yet Australian law relating to human genomic information in clinical care and research is complex and not always fit for purpose.

Issue under consideration: We will report on our in-depth legal analysis, guided by a preceding study of stakeholders’ needs and concerns regarding the integration of genetic results into networked EMRs.

Outcome: Our preliminary findings suggest:

–              Australian states and territories should pursue alignment with Commonwealth law on disclosing genetic information without patient consent in certain circumstances (Privacy Act 1988 (Cth) s 16B(4)).

–              Current law protects individual health information but may fail to adequately account for the use of information for familial health surveillance.

–              The My Health Records Act approach, involving mechanisms for consumer control over health information and provisions designed to mitigate privacy fears, may provide a useful model.

The legal analysis will inform recommendations to improve the integration of genetic test data into EMRs.


Biography:

Megan Prictor is a Research Fellow with the Health, Law and Emerging Technologies programme at Melbourne Law School, and a 2021 Dyason Fellow.  She conducts research at the nexus of law and emerging health technologies, such as innovative informed consent tools including dynamic consent, genomics and health data regulation. Megan holds a 2021 University of Melbourne Early Career Researcher Grant on genomic test results, electronic medical records and the law.  She works closely with the University’s Centre for Digital Transformation of Health as the health law stream lead and is involved in the development of clinical decision support software with the Department of General Practice.

Recent Comments
    Categories