Be explicit in your ethics application about any plans you have to make data available to other researchers or more broadly. Describe your strategies for protecting privacy and confidentiality, e.g. by ensuring
- that participants will not be identifiable, or
- that informed consent will be sought from participants for the proposed data re-use, or
- that access controls or re-use agreements will be in place.
Be explicit in your consent forms about any plans to make data available, who will be able to access the data, and how the data would be accessed and potentially re-used.
You may enhance your ability to share data later if you identify broad types of access rather than specific services that may be unsuitable or unavailable in future. For example, saying that you will publish data ‘through web-based institutional or subject archives or repositories’ will give you more flexibility than if you specify a single repository or archive that may not be available in future.
Do not specify in your ethics application that you will destroy data at a certain time, until you have considered the significance of the data and the possibility that it may be used in follow-up studies or as a basis for new work by you or other researchers. These considerations may alter the minimum retention period the research data is required to be retained.
Data does not have to be openly accessible to be shared for the benefit of future researchers and other interested groups. In many cases, mediated or restricted access could be appropriate. Even if your data is confidential, you may be able to share it under certain circumstances, for example:
- if the re-users have to register
- if the re-users make an application to an ethics committee or project board, or
- if a formal re-use agreement protecting participant confidentiality is in place.
Resources and contacts
- Griffith University Human Ethics Manual. Booklet 23 Regulatory and ethical privacy issues in human research - section 14.0 Privacy and the storage of data (intranet)
- No.4 in the Research Integrity Information Sheet Series, The responsible management of research data and materials (eintranet)
- Sharing sensitive data; Ethics and data sharing (Australian National Data Service)
- Consent and Ethics (UK Data Archive) especially subsections on Consent, Anonymisation, and Access control
- Guidelines for Ethical Research in Australian Indigenous Studies (Australian Institute of Aboriginal and Torres Strait Islander Studies, section 13 applies)
Seek advice from the Office for Research - Research Ethics and Integrity, if required.