2 July 2010 & 27 July 2011
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 on 2 July 2010 was attended by twenty-four Indigenous and non-Indigenous attendees, 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 was held on 27 July 2011 at the University of Melbourne. It brought 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. This year, major stakeholder organisations the NHMRC and the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) were also represented. More than 40 people attended the Roundtable. The second roundtable 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.
Reports were published on each roundtable to summarise presentations and discussions (see Publications below).
- Kowal, E. 2012, ‘Genetic Research in Indigenous Health: Significant progress, substantial challenges’, Medical Journal of Australia, vol. 197, issue 1, pp. 19-20.
- Genetic Research in Aboriginal and Torres Strait Islander Communities: Continuing the Conversation, E. Kowal & I. Anderson 2012, The Lowitja Institute, Melbourne.
- Genetic Research in Aboriginal and Torres Strait Islander Communities: Beginning the conversation, E. Kowal, L. Rouhani & I. Anderson 2011, The Lowitja Institute, Melbourne.