GUIDELINES FOR THE RELEASE OF ABORIGINAL AND XXXXXX XXXXXX ISLANDER HEALTH INFORMATION. The Commonwealth guidelines for the release of Aboriginal and Xxxxxx Xxxxxx Islander health information exist to protect Aboriginal and Xxxxxx Xxxxxx Islander people from the risk of identification at both an individual and/or at a community level. While not binding, these may also assist in considering data held by Victorian public health services. National guidelines include: Ethical conduct in research with Aboriginal and Xxxxxx Xxxxxx Islander Peoples and communities12, Guidelines for researchers and stakeholders13 and Keeping research on track II14. Further nationally based information is available through The Australian Institute of Aboriginal and Xxxxxx Xxxxxx Islander Studies (AIATSIS) 15. Internationally, the Research Data Alliance has published Recommendations and Guidelines related to Covid-19 data sharing16. These include a section dedicated to ‘Indigenous populations’ (Note: This term is used in these Guidelines. In the Australian context, this term should be understood to indicate Aboriginal and Xxxxxx Xxxxxx Islander peoples. The following paragraph utilises the term Indigenous as it refers to content from that document). The Research Data Alliance Covid-19 data sharing document recommends the use of the ‘CARE Principles’ (Collective benefit, Authority to control, Responsibility, Ethics). These provide a framework for guiding engagement with Indigenous Peoples’ data17. Identification of Indigenous Peoples in data collections has previously led to serious harm and/or stigma. It is expected that Indigenous Peoples should be able to exercise governance over data that derives from them, individually or collectively, regardless of who collects the data, or where they are held. This includes Indigenous data that are de-identified or anonymised for the purpose of sharing16. State specific (Victorian) guidance is available through the Lowitja Institute18 and the Victorian Aboriginal Community Controlled Health Organisation Inc19. At present, there is no Victorian Aboriginal and Xxxxxx Xxxxxx Islander Human Research Ethics Committee. Particular care is required if one or more of the following apply: • The experience of Aboriginal and Xxxxxx Xxxxxx Islander people is an explicit focus of all or part of the research • Data collection is explicitly directed at Aboriginal and Xxxxxx Xxxxxx Islander peoples • Aboriginal and Xxxxxx Xxxxxx Islander peoples, as a group, are to be examined in the results • The information has an impact on one or more Aborigin...
