Data Sharing and Release Legislative Reforms: A Submission in Response to the Discussion Paper

This submission to the Department of the Prime Minister and Cabinet responds to the discussion paper on the proposed Data Sharing and Release legislation, which Research Australia strongly supports. Focusing on data sharing for research and development (R&D), it maintains that the paper’s definition of R&D wrongly embeds a public benefit test and recommends instead a definition identical or similar to that used by the Australian Bureau of Statistics (ABS), followed by a separate Public Benefit test addressing how direct, certain and immediate the benefit must be. It contends that where public benefit exists, commercial interest should be irrelevant, since many health goods such as medicines and devices reach the public through the private sector. If a commercial use test is applied, it proposes weighing public against private benefit and exempting universities, medical research institutes, publicly funded research organisations, and R&D on medicines, devices and therapeutics. It recommends that the detail of both tests sit in guidance from the National Data Commissioner, supports the discussion paper’s positions on consent and two-tier accreditation, and notes that most universities fall outside the Privacy Act 1988, suggesting contractual privacy obligations. It also maintains that data custodians should not require Human Research Ethics Committee approval for all proposals, since negligible and low risk research has alternative pathways under the National Statement on Ethical Conduct in Human Research. RA polling from 2017 found 93% of Australians support researchers using patients’ medical records.