The Department of Health commissioned Terri Janke and Company to prepare this issues paper on the legal, ethical and social issues relevant to the collection and use of Indigenous health genomics samples and information. The paper was written and researched by Laura Curtis and Patrick Goulding and Dr Terri Janke.

 

This issues paper identifies the legal issues arising from the collection and use of Aboriginal and Torres Strait Islander genomic samples and information in the clinical and research settings. It focuses on the current and emerging ethical, legal, social and cultural issues, identified by Aboriginal and Torres Strait Islander stakeholders. This includes the issues related to community engagement, governance, consent, sharing, privacy, disclosure, discrimination, commercialisation, ownership, return of benefit and management of personal genomic information.