Data Sharing and Release Legislation: Response to the Issues Paper
In brief
Abstract
This submission responds to the Australian Government’s issues paper on proposed Data Sharing and Release legislation, which would create a framework and a National Data Commissioner (NDC) to improve access to government-held data while safeguarding privacy. Research Australia supports the broad objects of the legislation but notes that the short consultation period limited its ability to canvass members, so many of its comments identify issues to resolve before the Bill is drafted. It makes three sets of recommendations. First, the purpose test, particularly ‘research and development with clear and direct public benefits’, is too strict: it should allow for the prospect rather than the certainty of public benefit, including economic growth; make clear that a private benefit to a company or individual does not rule out a public benefit, using commercial clinical trials as an example; allow private companies to apply on the same criteria as others; and be subject to further consultation. Second, the NDC’s role should extend beyond general guidance to assisting applicants, reviewing applications, suggesting alternative methods and controls, and helping resolve disputes with data custodians, given the Productivity Commission’s finding that a risk-averse culture is a barrier to data release. Third, before a trusted user accreditation model is designed, more information is needed on the number of organisations and individuals involved, noting 43 universities, a similar number of medical research institutes and several hundred sub-units, and the process should later be reviewed for effectiveness.
| Published | 1 August 2018 |
|---|---|
| Type | Submission |
| Platform | Health innovation, Smarter investment, System reform and governance |
| Topic | Clinical trials, Commercialisation, Data, Data linkage, Industry |
| Author | Research Australia |
| Format | 12 pages · PDF |