Table 4 Summary of practical recommendations
From: Culturally safe and ethical biomarker and genomic research with Indigenous peoples—a scoping review
Component identified | Practical recommendations for future research |
|---|---|
Relationships and community engagement | • Establish relationships grounded in Indigenous cultural values and perspectives, trust and mutual benefit • Engage and involve the local community in all aspects of the research process from planning to dissemination • Utilise participatory action research methods, engage Indigenous community members as collaborative researchers (capacity building) and establish an Indigenous advisory body • Encourage ongoing dialogue and communication from the pre-research phase to address evolving needs, concerns, and opportunities in the research process |
Learning | • Provide jargon-free, learning embedded in strong cultural practices (such as storytelling and yarning sessions for Aboriginal and Torres Strait Islander peoples) to potential participants on research processes, benefits and risks • Co-design and develop resources like videos and brochures in local languages with Indigenous artwork to improve genetic health literacy • Ensure research and project team have been provided in-depth cultural safety training, with a specific focus on cultural elements of genomic and/or biomarker research |
Research coordination and logistics | • Understand practical barriers that Indigenous peoples may face in participating in research • Provide free transport or financial assistance to support potential participants • Costs to the communities for research participation must be recognized and reimbursed |
Consent | • Design informed consent materials tailored to the needs and preferences of the local community and individuals participating in research |
Samples and biospecimens | • Understand and respect the cultural significance of biospecimens by handling (including disposal) them in a way that does not contradict community beliefs and standards • Develop strategies like videos and barcode tracking to enhance community control over their samples • Specimens and knowledge gained from the project ideally should remain under the ownership of the community but under the stewardship of the research team |
Biobank structures | • Embed Indigenous governance structures to emphasise Indigenous control of biobanks • Respect participant preferences regarding anonymity and specific/ongoing consent arrangements |
Protections and policy | • Establish mechanisms for permanent cultural oversight and guardianship of biospecimens and biobanks by Indigenous peoples • Formalise Indigenous peoples’ authority over their data through government policies • Advocate for policy changes and political support to entrench these powers and right |