Privacy laws and sharing of genomic and health data.
A key challenge in genomic medicine is determining how Privacy laws affect the sharing of genomic and related health data for clinical care and research.
Currently, much of the genomic and related health data collected in Australian states and territories is kept in databases not linked to each other. To better investigate and diagnose genetic disorders, clinicians and researchers need to be able to access and share this information across state and territory ‘boundaries’. Australian Genomics is exploring a solution where these databases are ‘connected’ via a secure federated data sharing network, which — with the consent of patients — allows specific information to be accessed by clinicians and researchers. Australian Genomics, in consultation with BioGrid Australia, prepared a brief to obtain advice from Health Legal in relation to this proposed data sharing framework.
Australian Genomics asked Health Legal to answer the following questions:
Snapshot of key Health Legal findings:
A summary of the Health Legal Report is available here.
This summary was prepared by Australian Genomics' Policy Officer, Andrea Belcher, and Program Coordinator, Matilda Haas, with assistance from Ainsley Newson (Associate Professor of Bioethics and Australian Genomics Ethics lead) and Norah Grewal (Research Associate) from The University of Sydney.
Norah Grewal and Ainsley Newson are currently undertaking further academic research into the concepts raised in the Health Legal report. This work is part of an Australian Genomics ethics research project that is exploring the ethical, legal and policy issues in genomic data sharing. If you would like to know more about this, please contact Norah Grewal at firstname.lastname@example.org