Dr Monique Jonas1, Mr Dinesh Devaraj2, Prof. Mark Taylor3, Ms Josephine Johnston4
1University of Auckland, Auckland, New Zealand, 2National Indigenous Australians Agency, Brisbane, Australia , 3University of Melbourne, Melbourne, Australia, 4University of Otago, Dunedin, New Zealand
Biography:
Bios to come
Abstract:
Researchers and policy makers increasingly deploy national data sets. New Zealand’s Integrated Data Infrastructure (IDI) contains a rich array of data about individuals and household units, much of it from government agencies. Similarly, in Australia, national initiatives are progressing e.g. the Australian National Data Integration Infrastructure (ANDII), DATA scheme, My Health Record (MHR), and the National Health Data Hub (NHDH). Research using these data sets and governance structures promises new insights into health and well-being, but it also poses ethical risks. This panel considers the potential for such research to result in group harms e.g. research, and subsequent policy, reproducing or amplifying discriminatory narratives or bias, interfering with group privacy, or breaching community or cultural norms. It can be difficult for ethics committees to identify and assess such risks, and it may be uncertain where responsibility for addressing them lies.
This panel will identify specific ways in which research involving national data sets may threaten individual, collective, and group interests. We will consider governance processes in Australia and New Zealand and describe their limitations, with a particular focus on consent. Potential policy levers for protecting collective and group interests will be explored, such as the Australian Government’s Framework for Governance of Indigenous Data. The panel will culminate in an open discussion about the nature of group harms, their governance in respect to national datasets, and potential regulatory and policy levers for more ethical data-related practices.