Dynamic consent as a new approach for engaging people in health research and upholding data sovereignty – Victorian Aboriginal perspectives
Aboriginal Leadership GroupLearn more
Dynamic consent is a new approach to consent with significant potential for improving the research experience of Aboriginal Australians. Compared to traditional or broad consent, which is typically undertaken once at study entry, dynamic consent is active, allowing for ongoing engagement and control over research involvement over time.
This project will comprise three activities:
1. Online National survey: Online survey of key Indigenous health researchers and stakeholders, aiming to identify variations in the application of ethical guideline documents, as well as governance and consent arrangements among researchers conducting Aboriginal and Torres Strait Islander health research.
2. Video interviews: Victorian Aboriginal people with health research experiences exploring past experiences of consent and attitudes towards dynamic consent.
3. Community engagement session: the results of 1 & 2 are discussed with stakeholders culminating in institutional framework / principles for dynamic consent in Indigenous health research.
This multidisciplinary collaboration will test the viability of dynamic consent as an innovation in health care research with significant potential for improving public health research and clinical outcomes. The project will explore modes of consent beyond the individual (group/family-based consent) as well as Indigenous concerns related to genomics research. It will also explore the use of ethical guideline documents as an important element in arriving at appropriate governance and consent arrangements for Indigenous health research.
The output of this project will support improved research practices and participant experiences of health research. For Aboriginal people, dynamic consent may offer more meaningful and culturally-sensitive consent processes and enhance participant control over data. This will also benefit Indigenous health researchers by improving trust and engagement with Aboriginal participants.