Academic journal article Cross / Cultures

Difficult Conversations: Talking about Indigenous Genetic Health Research in Australia

Academic journal article Cross / Cultures

Difficult Conversations: Talking about Indigenous Genetic Health Research in Australia

Article excerpt

GENETICS IS AT THE FOREFRONT OF MEDICAL RESEARCH, but it IS rarely used in Indigenous health-research projects. In the past, proposals to conduct genetic studies in Indigenous communities in Australia have been highly criticized and rarely funded. However, genetic researchers worldwide argue that genetics has the potential to reduce health disparities (including Indigenous health disparities) in multiple ways: through understanding disease pathogenesis; using genetics to probe environmental risk; predicting disease risk; finding novel diagnostics and drug targets; and pharmacogenomics . l

Understandably, many Indigenous people interpret genetic research in the context of their experiences of colonization. Fears of genetic theft or 'biopiracy', fears that genetics will be used to determine Aboriginality and may fuel racism, poor access to the potential health care innovations that genetics may bring, bad experiences of the Human Genome Diversity Project (known by some as the 'Vampire' project) and struggles over access to DNA extracted from human remains - all constitute barriers to effective research partnerships between Indigenous communities and genetic researchers.2

Clearly, there are serious risks of genetic research for minorities as well as potential benefits. The only way in which these risks and benefits can be managed effectively is through open discussion among all of those parties with an interest in the conduct of genetic research in Indigenous communities.3

On 2 July 2010, a roundtable on Indigenous genetic research in Australia was organized by the authors on behalf of the Lowitja Institute, Australia's national institute for Aboriginal and Torres Strait Islander health research. The Lowitja Institute is an innovative research body that brings together Aboriginal organizations, academic institutions, and government agencies to facilitate collaborative, evidence-based research into Aboriginal and Torres Strait Islander health.4 It is controlled by an Indigenous-majority board. The roundtable was organized under the auspices of Professor Ian Anderson, the Director of Research and Innovation.

The roundtable 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 debate was especially significant, as it was the first discussion of genetics and Indigenous health to have ever taken place in Australia.5 While comparable nations such as Canada have a long history of discussing these issues, in Australia these conversations have not yet taken place (see Kowal, this volume). The aims of this conversation were to create a community of interest around Indigenous genetic research; to foster collaborative genetic research in Indigenous communities that is ethical, productive, and of high quality; and to begin to consider what tools and models are needed to make genetic research a culturally safe option for Indigenous people.

The Lowitja Institute was well aware of the potential difficulty of this conversation. As Ian Anderson commented,

We have hosted conversations on lateral violence in Indigenous communities and other sensitive issues. These are topics that are in the 'too-hard' basket that can end up in unproductive conversations. But we know that it is important to have those conversations. 7

Indeed, discussions were honest and constructive and considered many difficult issues. These included the sensitivities inherent in the reporting requirements of sample quality control (degree of heterozygosity or 'inbreeding' in the population, and corrections for population structure and diversity of ancestry within Indigenous populations); the risks involved when research findings are generalized to the entire Indigenous population; the existence of highly publicized examples of 'bad' Indigenous genetic research (including the Havasupai case in the USA and the 'Warrior gene' controversy in New Zealand); and the need to provide short-term benefits to participating Indigenous communities, given the long-term nature of the potential benefits of genetic research. …

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