Legal & Ethical: Difference between revisions
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==Legal standards == | ==Legal standards == | ||
The relevant legal standard in Australia for the creation, curation, preservation, and access of data is The Privacy Act 1988, the principle Australian Government legislation protecting the handling and disclose of individuals’ personal information. | The relevant legal standard in Australia for the creation, curation, preservation, and access of data is The Privacy Act 1988 [63], the principle Australian Government legislation protecting the handling and disclose of individuals’ personal information. | ||
==Ethical standards == | ==Ethical standards == | ||
Revision as of 04:40, 10 September 2024
Legal & Ethical
Legal standards
The relevant legal standard in Australia for the creation, curation, preservation, and access of data is The Privacy Act 1988 [63], the principle Australian Government legislation protecting the handling and disclose of individuals’ personal information.
Ethical standards
The depositor is responsible for ensuring that data provided to the ADA has been collected from research participants subject to approved research ethics requirements. The ADA does not explicitly request or require evidence of ethical approval or review prior to deposit and the depositor must determine if their ethical obligations permit sharing of data.
...Link to research ethics guidelines...
Australian researchers working with human participants and based at organisations that receive National Health and Medical Research Council (NHRMC) public research funding are subject to NHMRC National Statement on the Ethical Conduct of Research, and the Australian Code for Responsible Conduct of Research (ACRCR).
NHMRC National Statement on the Ethical Conduct of Research: https://www.nhmrc.gov.au/research-policy/ethics/national-statement-ethical-conduct-human-research (accessed 2024-06-18)
Australian Code for the Responsible Conduct of Research: https://www.nhmrc.gov.au/about-us/publications/australian-code-responsible-conduct-research-2018 (accessed 2024-06-18)
NHMRC National list of ethics committees: https://www.nhmrc.gov.au/sites/default/files/documents/attachments/Committee/HREC-Human-Research-Ethics-Committees-registered-with-NHMRC-LIST.pdf
The ADA does occasionally accept deposits from organisations that are not governed by the NHMRC guidelines. In these instances the ADA will work with the depositor to understand their consent process and determine appropriate access conditions if the data is deemed suitable for publication.
The ADA License Agreement and Terms of Use specify appropriate uses of the data that comply with the original ethics approval. The standard license agreement states that, ‘The material is not to be used for any non-statistical purposes, or for commercial or financial gain without the express written permission of the Australian Data Archive National Manager’.
The Five Safes Framework
The ADA also complies with ethical norms for data sharing as described in the Five Safes Framework. As described above, procedures for identifying and mitigating disclosure risk are in place to ensure data is sufficiently safe for secondary use. The ADA also evaluates requests for data access against the four remaining risk aspects of the framework to ensure that the people making the request, their projects, settings, and outputs are also sufficiently safe.
Management of disclosure risk
All data are evaluated by an ADA archivist to determine disclosure risks and appropriate actions that should be taken to mitigate that risk. To comply with the Privacy Act, archivists first ensure that no directly identifying information (such as participant names and contact details) are included in the data and will remove any such information from all copies of the data files held and disseminated by the ADA. The archivists will also examine the data for indirect indentifying information and evaluate risks of disclosure that might arise from combining that information and/or linking that data with other sensitive information in data or other sources.
Mitigation strategies
There are a range of mitigation actions that archivists can recommend to depositors incuding...
The ADA will typically make these changes to the data on behalf of the depositor.
External guidelines
- ABS: Data confidentiality guide
https://www.abs.gov.au/about/data-services/data-confidentiality-guide
- OAIC: Deidentification and the Privacy Act
- UniSQ: Ethics, consent and data sharing [pdf]
Risk assessment tools at ADA
- [see sections 10 & 11]