Genetic research in Indigenous health: significant progress, substantial challenges

To the Editor: Kowal’s article resonates with our experience.1 However, the National Health and Medical Research Council has supported genetic testing in Indigenous Australians for longer than she cites. Through a 1995–1997 project grant, a 1998 PhD scholarship,2,3 a 2006 program grant and an Australia Research Fellowship (2008–), the NHMRC has supported work on kidney and related chronic diseases, in protocols endorsed by two remote communities and approved by appropriate agencies. Information from family pedigrees, phenotyping and DNA profiling underpins validation studies underway in a currently funded project grant.

However, progress has been agonisingly slow, with much interference, as Kowal describes, which generates trepidation in conducting and publishing the work.4 The waste of precious research funds and obstruction of scientific progress by these impediments are very serious. In one community, which has engaged in dialogue on genetic testing for 20 years, which wants to participate and contribute on the global stage, and in which DNA has already been collected and stored, a very long delay was resolved only through a heated and explicit protest by the community itself.

Aboriginal people must marvel at the collaborative disarray among non-Indigenous agencies supposedly acting in their interests. We must question the probity of obstruction of projects, genetic and otherwise, that are requested by specific communities, and approved through orthodox channels, by intermediary bodies with whom those communities have no direct connection. Non-Indigenous people might not tolerate such interference. Aboriginal people should be alerted to these issues and invited into the dialogue through the news and social media, including Imparja Television and Living Black, email, Twitter and Facebook, and indeed, within the pages of the Journal itself.