Engaging Australia’s First Peoples in the development of ethics and protocols for a family-based microbiome study and social health history project
To establish Aboriginal and Torres Strait Islander engagement strategies, communication tools and ethics for a future First Peoples microbiome study and social health history project.
- Identify First Peoples protocols for the ethical collection, storage and preservation of microbe sampling and epigenetic analysis related to multiple generations of First Peoples families.
- Map First Peoples leadership in describing, and responding to, historically collected biological samples and genetic data.
- Define ways in which contemporary social practices and cultural knowledge might support a culturally led project with long term benefits to the health and wellbeing of First Peoples families.
Project leader: Professor Kerry Arabena, Director, Indigenous Health Equity Unit
- South Australian Health and Medical Research Institute (SAHMRI)
- Walter and Eliza Hall Institute (WEHI)
- The Australian National University
- Murdoch Children’s Research Institute (MCRI)
Administering organisation: University of Melbourne
Project timeline: 8 December 2017—31 March 2019
This research activity was carried out in four stages:
- Review of evidence: review of current evidence and work in the area of social microbiome/biosocial research within Indigenous groups, including challenges and enablers, ethical issues and guidelines, and building relationships between research institutions and communities.
- Consultation: via focus groups and in-depth interviews.
- Analysis of findings: qualitative findings of the focus groups and interviews went through a thematic and trend analysis. Findings were viewed for interpretation by the research team, peer researchers and the First1000 Days Australia (First 1000DA) Research Advisory Committee.
- Development of draft protocols and feasibility report:
- Drawing upon the combined project findings, draft protocols were developed to guide ethical engagement and recruitment of future participants, biomedical specimen collection and communication tools and resources.
- Finally, a feasibility report was produced to inform future F1000DA bioscience projects. An institutional policy and practice document was also written to support Aboriginal and Torres Strait Islander participation in long term bioscience projects elsewhere.
The interviews conducted in the research made it possible to engage with families and individuals on issues of Aboriginal and Torres Strait Islander health inequities, historical practices of biocultural collection and what needs to be considered culturally in order for a future research project to be carried out with free-and-informed consent.
- Increased understanding of how Aboriginal and Torres Strait Islander families want to be engaged in biomedical science.
- The 3-5 minute digital learning tool will be useful in educating families about what microbiome is and what the message from the research is about.
- Communication tools, translational strategies, engagement and ethical processes developed from the project will guide collaboration with community and partners.
- Institutional policies and practices developed from this research will support the participation of Aboriginal and Torres Strait Islander people in long term bioscience projects.
- Building of Indigenous community research capacity.