Genetic research in Aboriginal and Torres Strait Islander communities: beginning the conversation

Abstract

Human genetic research is a rapidly developing field that promises to deliver a range of health benefits to the population in general. However, genetic research that takes place with minority groups raises many sensitive issues and has generated much debate in scientific journals and the media. Attempts at genetic research in Indigenous communities have proven particularly controversial. Indigenous peoples have raised concerns about a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of ‘victim-blaming’ approaches to health inequalities, and possible misuse of blood and tissue samples. The philosophical and cultural implications of genetic research can fundamentally change the ways that we think about our bodies, disease, human variation and what it means to be human. For Indigenous peoples, these can also challenge one’s sense of identity and cultural beliefs. In Australia, these issues have acted as a barrier to conducting genetic research in Indigenous communities, and, as a result, genetic research in Australian Indigenous populations is in its infancy. This is in sharp contrast with comparable Indigenous groups in Canada, the United States and Aotearoa/New Zealand, which have been considering the use of genetic technologies and participating in genetic research for some time. Drawing on international literature and local contexts, this paper reviews the ethical issues relevant to genetic research in an Australian Indigenous context, including informed consent, storage of samples, privacy and confidentiality, ownership and use of samples, commercialisation, benefits to the community, effects on collective identity and risks to community harmony. Finally, it considers how Australian researchers and Indigenous communities can constructively respond to the challenges of genetic research such that Indigenous Australians can equally benefit from genomic advances.