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.