Policy Resources

Guide for Culturally Safe Dementia Biomarker and Genetic Research with Aboriginal and Torres Strait Islander Peoples and Communities

Dementia biomarker and genetic research is advancing rapidly and has the potential to improve the diagnosis, care, and outcomes for people living with dementia. This includes research involving biological samples, imaging and other forms of health data. While these approaches offer promise, they also raise important ethical and cultural considerations, particularly when dementia biomarker and genetic research involves Aboriginal and Torres Strait Islander peoples, including Elders living with cognitive impairment. In recent years, progress has been made in the field of genomic research with Aboriginal and Torres Strait Islander peoples. National initiatives like the National Centre for Indigenous Genomics (NCIG) and the Australian Alliance for Indigenous Genomics (ALIGN) have established ethical frameworks for genomic research. However, until now, a critical gap remained: there was no existing guidance specifically addressing dementia biomarker and genetic research with Aboriginal and Torres Strait Islander peoples.

This gap is significant because dementia biomarkers and genetic research raise unique ethical and cultural considerations, including:

• People living with dementia can have fluctuating or impaired decision-making capacity, which needs special consideration, particularly when giving consent for collection, use, storage or disposal of samples or data.
• The use of many emerging biological or genetic markers are not yet validated for clinical care.
• Results of research tests may only indicate likelihoods or risks of developing dementia rather than offering a definitive diagnosis (probabilistic results). This may, in turn, lead to concern or worry.
• Biospecimens may carry deep cultural and relational significance – so their collection, use, storage and disposal need to be very carefully considered.

The OnTRACK (Teaching, Research and Community Knowledges) Centre of Research Excellence, funded by the National Health and Medical Research Council, identified this gap as a Community priority and supported the development of dementia-specific guidance. It is designed to be used by researchers who are planning, conducting, managing or governing dementia biomarker, genetics or genomics research with Aboriginal and Torres Strait Islander peoples.

This guide has been developed to offer evidence and expert-informed guidance for researchers conducting dementia biomarker and genetic research with Aboriginal and Torres Strait Islander peoples. It promotes active consideration and alignment with Community priorities and culturally informed ways of knowing, being and doing. This guide is grounded in the principle that dementia biomarker and genetic research should involve Aboriginal and Torres Strait Islander peoples at every stage of the research process.

The guide emphasises Aboriginal and Torres Strait Islander leadership, genuine partnership, and shared decision-making, including the involvement of families and carers. Key areas addressed include community engagement, culturally safe consent and communication, governance of biological samples and data, ethical storage and repatriation, and the responsible return and use of research findings.

This guide builds on existing national ethical frameworks and extends them to the specific and evolving context of dementia biomarker and genetic research. This guide is intended to support both researchers and institutions to undertake dementia biomarker and genetic research that is ethically sound and accountable to Aboriginal and Torres Strait Islander peoples.

The aim of this resource is to contribute to improved dementia care and outcomes and to more equitable access to the benefits of biomedical research by strengthening culturally informed research practice.

Click here to download a copy of the guide.