Genetic research in Indigenous health: significant progress, substantial challenges

In reply: I thank Hoy, and Garvey and Bernardes, for their responses. Hoy highlights the difficulties her group has experienced in conducting genetic research in an Aboriginal community over two decades. Indeed, this was the project I referred to as losing its ethics approval as a direct result of the Human Genome Diversity Project.1 She attributes the difficulties she has faced to conflicting views between the community, which has consistently supported her research, and “intermediary bodies” who have sought to delay or curtail her activities. Without knowing the details of the “intermediary bodies” of which she speaks, I can only reiterate that the sensitivity of genetic research in Indigenous contexts provokes extreme caution among those who need to make decisions about research projects. Developing clear guidelines for Indigenous genetic research will give all the parties involved in research governance confidence that researchers and communities can negotiate appropriate research processes. Further, if guidelines are developed using a collaborative process, the process itself will enhance the capacity of Indigenous communities, ethics committees and researchers to confidently engage in discussions about genetic research.

Garvey and Bernardes discuss the provision of clinical genetic services to Aboriginal and Torres Strait Islander people. This is another neglected issue that will need to be tackled as genomics becomes more integrated into clinical care over the coming years. There has been recent attention to Indigenous Australians’ lack of access to allied health, dental and specialist medical care.2,3 Genetic health services may be another area that needs consideration.

Garvey and Bernardes’ finding that over half of their study participants were interested in accessing clinical genetic services shows that there is likely to be unmet need for these services, and further, that thought should be given to making genetic health services appropriate and accessible to Aboriginal and Torres Strait Islander people. For my own part, I am currently working with colleagues and student researchers from the Master of Genetic Counselling program at the University of Melbourne to record the experiences of the few genetic counsellors and clinical geneticists who currently provide health services to Indigenous Australians. We hope that these findings will generate further interest in this issue.