Indigenous genomic health research roundtables

July 2010 & 2011, Melbourne

The Lowitja Institute facilitated two roundtables on genetic research in Aboriginal and Torres Strait Islander communities. The roundtables explored the mechanisms that need to be in place to ensure that Aboriginal and Torres Strait Islander communities are empowered to make informed decisions about participating in genetic research.

The first roundtable, in July 2010, was attended by 24 Indigenous and non-Indigenous participants, including experts in genetics, Indigenous health research, Indigenous research ethics, genetic ethics and genetic literacy. This discussion was especially significant because it was the first national discussion of genetics and Indigenous health to have taken place in Australia. Presentations and discussions covered:

• reviews the ethical issues relevant to genetic research in an Australian Indigenous context
• existing guidelines for genetic research in indigenous communities internationally; and
• literature on genetic literacy in Indigenous contexts.

The second roundtable, in July 2011, brought more than 40 Aboriginal and Torres Strait Islander researchers, ethics committee members and community representatives together with non-Indigenous researchers, genetic literacy experts and bioethicists to talk through the wide- ranging issues that genetics raises for Aboriginal and Torres Strait Islander communities. Major stakeholder organisations the NHMRC and the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) were also represented. Discussions covered issues of:

• community consent
• storage of biological samples over the long term (including biobanks)
• cultural perspectives on blood samples; and
• the possible health benefits that whole genome sequencing may eventually hold for Indigenous communities.

Related resources:

• Kowal, E. 2012, ‘Genetic Research in Indigenous Health: Significant progress, substantial challenges’, Medical Journal of Australia, vol. 197, issue 1, pp. 19-20 
• Kowal, E., Rouhani, L. & Anderson, I. 2011, Genetic Research in Aboriginal and Torres Strait Islander Communities: Beginning the conversation, The Lowitja Institute, Melbourne.
• Kowal, E. & Anderson, I. 2012, Genetic Research in Aboriginal and Torres Strait Islander Communities: Continuing the Conversation, The Lowitja Institute, Melbourne