Dr Edilene Lopes Mcinnes1, Professor Rachel Ankeny2, Professor Annette Braunack-Mayer3, Associate Professor Azure Hermes4
1University of Adelaide, Adelaide, Australia, 2Wageningen University & Research, Wageningen, The Netherlands, 3University of Wollongong, Wollongong, Australia, 4Australian National University, Canberra, Australia
Abstract:
Various data governance frameworks have been developed to increase open access to data. The FAIR (Findable, Accessible, Interoperable, Reusable) principles allow data to be managed in a transparent and reusable format that will allow long-term stewardship of digital information produced by researchers worldwide. However, other relevant debates around data custodianship relate to how underrepresented groups may be affected by open access to data. Considering Indigenous groups’ perspectives, the Global Indigenous Data Alliance developed the CARE (Collective benefit, Authority to control, Responsibility, Ethics) Principles for Indigenous Data Governance. This framework brings to the fore the rights of Indigenous groups and aims to increase their (and other similar communities) control over data produced about their peoples, lands, and resources.
In this “In Conversation”, we propose to discuss health data governance related to FAIR and CARE principles from three perspectives: Indigenous groups, CALD (Culturally And Linguistically Diverse) communities, and empirical research involving stem cells in Australia. Each perspective will be presented by a researcher who will share some of their experiences with projects and the challenges in enacting FAIR and CARE principles.
Panel session format:
5 minutes – Introduction
45 minutes – 3 presentations (15 minutes each)
10 minutes – Discussion
The proposed panellists and facilitators (who all already accepted participating in the panel):
Facilitator: Dr Edilene Lopes McInnes
Panellists:
– Assoc Prof Azure Hermes (Indigenous groups)
– Prof Annette Braunack-Mayer (CALD communities)
– Prof Rachel Ankeny (Stem cell research participants)