The Practice of Engaging Aboriginal and Torres Strait Islander Communities in Genome Research

Abstract

The Australian Government recognises an obligation to ensure that Aboriginal and Torres Strait Islanders (Australia’s First Peoples) are included in the integration of genomics into the healthcare system. First Peoples inclusion in this area requires going beyond general principles for First Peoples health research. This extra need exists for historical reasons as well as the need to maintain connections between patients, participants and communities and between the bio-specimens and data contributing to the resources underpinning genomics. The National Centre for Indigenous Genomics (NCIG) at the Australian National University in Canberra, Australia, has developed a framework that addresses these requirements through its dedicated First Peoples governance and enduring community engagement processes relating to stored heritage materials, data management and culturally agreed terms for collection preservation and potential use into the future. This chapter incorporates a First Peoples perspective on the NCIG by describing the practical application of ‘doing the right thing’, proceeding at ‘the pace of trust’, obtaining informed consent as part of enduring relationships, acknowledging cultural perspectives, understanding diversity of views and cultural practices within and between communities and respecting the need for community ownership and self-determined mobilisation of First Peoples involvement with research. This culturally appropriate methodology has been developed in partnership with individuals, family groups and community leaders, who are directly involved in genomic research. It provides a model for First Peoples to play an invested and sustaining role in the future development of genome science and precision medicine.

Citation

Huebner, S., Hermes, A. and Easteal, S. (2020), "The Practice of Engaging Aboriginal and Torres Strait Islander Communities in Genome Research", George, L., Tauri, J. and MacDonald, L.T.A.o.T. (Ed.) Indigenous Research Ethics: Claiming Research Sovereignty Beyond Deficit and the Colonial Legacy (Advances in Research Ethics and Integrity, Vol. 6), Emerald Publishing Limited, Leeds, pp. 109-123. https://doi.org/10.1108/S2398-601820200000006008