Our approach to harvesting principles of Indigenous Data Sovereignty in Australia
Presenter: Skye Trudgett
Author names: 1Trudgett, S
Author affiliations: 1 National Drug and Alcohol Research Centre , University of New South Wales, Sydney, Australia
2 Centre for Big Data Research in Health, University of New South Wales, Sydney, Australia
3 Wellbeing and Preventable Chronic Diseases Division, Menzies School of Health Research, Darwin, Australia
4 School of Health Sciences, University of Sydney, Sydney, Australia
Introduction: As researchers working with young people in regional, rural and remote communities, we are seeking to improve the breadth and quality of Indigenous data however this needs to be balanced by efforts to ensure those data are collected and used appropriately. Through an ARC Funded YARRN project, researchers reviewed literature and harvested principles for Indigenous Data Sovereignty (IDS) in Australia as a mechanism to protect Indigenous data being acquired in our research. These principles have been applied to the research project thereon.
Aims: The aim of the literature review was to identify published IDS-relevant studies, describe the key characteristics of those studies, identify the frequency with which they cite existing IDS principles and consider a framework for how IDS principles might be operationalised.
Methods: A PRISMA compliant systematic scoping review. Existing IDS principles published in Canada, New Zealand, Australia and the 2017 Indigenous Data Sovereignty Symposium were synthesised, to avoid duplication of similar principles, into eight IDS principles: i) ownership; ii) control; iii) accessibility; iv) custodianship; v) accountability to First Nations; vi) amplify the voice of the community; vii) relevant and reciprocal; and viii) sustainably self-determining.
Results: Ten relevant published studies were identified. The number of IDS publications has increased over time: half the IDS studies identified were published in the six years to May 2018. The researchers are currently broadening the search to August 2020. A framework to operationalise IDS principles is proposed that is both standardised internationally and able to be tailored to the needs and specific circumstances of different countries, First Nations communities and First Nations service providers.
Implications: There is a clear need to establish and agreed set of IDS principles and a framework for their operationalisation. This review identifies that while control and ownership of data appear to be relatively uncontested IDS principles, there is less consensus about the principles of accountability, sustainable self-determination and amplifying the voice of community, and little consensus about accessibility, possession and relevance and reciprocity. The apparent moderate or little consensus for some potential IDS principles does not necessarily reflect their relative importance, but may indicate a need to more clearly define, or simply increase awareness of, those IDS principles.