On August 15, the Australian Senate referred the My Health Record System to the Senate Community Affairs References Committee for an Inquiry and Report.
Australian Genomics has recently lodged a submission in response to the My Health Record System Inquiry, in which we consider the benefits and implications of the My Health Record System in the context of the implementation of genomic medicine in Australian healthcare. As such, the response addresses some of the terms of reference of the Inquiry, as appropriate.
The following key recommendations were made in the submission:
- Supports the My Health Record system in principle;
- Supports uploading of genetic or genomic pathology test reports to the My Health Record system where a patient has given consent to the result being in the record;
- Supports the current policy position (via the Secondary use Framework, including ‘opt out’ provisions) that provision of the My Health Record system data: will not be permitted to insurance agencies; but will be permitted for research and to meet the purposes of health-related commercial entities, subject to appropriate access, privacy, and security controls, including consent of the healthcare recipient;
- Asks that careful consideration is given to the format of My Health Record system data to ensure data are accessible and searchable for the purposes outlined in (3);
- Supports national consistency in terms of the categories of health records that each state and territory uploads to the My Health Record system; and
- Encourages a robust, government-led public engagement program, together with transparent policy development, as the My Health Record moves forward.
Public hearings are currently underway and an Inquiry report is expected to be handed down October 8, 2018.