Join Us and Data Sovereignty
Data Sovereignty is defined as: the “Rights of Indigenous Peoples to govern the collection, management, access, interpretation, dissemination and reuse of data related to them” (Snipp, 2016).
Data sovereignty is an essential aspect of self-determination, which is a fundamental right of Indigenous peoples. For Aboriginal and Torres Strait Islander peoples, data sovereignty means the ability to collect, manage and use their own data in a culturally appropriate way, reflecting their own values, beliefs, and perspectives.
All projects that seek to access Aboriginal and/or Torres Strait Islander participants will need to obtain ethical approval from a relevant Aboriginal and Torres Strait Islander ethics committee. You can find a list of Human Research Ethics Committees registered with NHMRC here.
A Cultural Governance Approach
A cultural governance approach is a way of managing data in a way that reflects Aboriginal and Torres Strait Islander culture and values. It recognises that Indigenous peoples have unique knowledge and understanding of their communities and their ways of life, and that these should be respected and reflected in the way data is collected and managed.
The cultural governance approach is based on the following principles:
- Self-determination – Indigenous peoples have the right to control their own data, and to determine how it is collected, managed, and used.
- Informed consent – Indigenous peoples should be fully informed about the purpose, process, and potential outcomes of data collection, and should give their free, prior, and informed consent to the use of their data.
- Respect for culture – Data collection and management should respect and reflect the cultural values and traditions of Indigenous peoples.
- Participation and engagement – Indigenous peoples should be actively involved in all stages of the data collection and management process, from planning to implementation and evaluation.
- Benefit-sharing – The benefits of data collection and management should be shared equitably with Indigenous peoples.
Adapted from the Mayi Kuwayu Study Guidelines for Data Use
