Closing the gap, unlocking data

The political dialogue that has dominated my lifetime regarding Indigenous Australians has seemed to be nothing but nuanced language. With a carefully framed dialectic of espousing the concept of ‘closing the gap’ in every relevant press conference, is it the nature of the language being politicised that is preventing the gap from being closed?

One of the most significant issues affecting Indigenous health is the lack of data. Tilenka Thynne who is a clinical pharmacologist and clinical academic at Flinders University told me during a work call that much about the issues of adverse side effects to pharmacological drugs in Indigenous Australians is speculative because of the absence of data. She and her colleagues have access to case studies of individuals that have reported adverse side effects, however, they don’t know what that information means in terms of population. This is becoming an increasing problem as studies have begun to emerge that suggest certain medications disproportionately affect Indigenous populations.

If the problem is a lack of data, is it not the best thing to inundate researchers with as much information as possible?

Whilst the USA has implemented policy to ensure that government is responsible for collecting population data regarding negative side effects of medications on disadvantaged groups, the Australian government seems to remain unmoved about regulating itself or the pharmaceutical industry. Australia is home to a variety of orphaned tissue collections from Indigenous Australians taken, almost definitely, without consent throughout the mid to late half of the previous century. Ethical standards have evolved since then and now these tissue samples cannot be studied without consent of a guardian who has a documented relationship with the donors. However, since we do not know where the donors are from, no communities have claimed ownership of the tissue samples. But should the information contained in these collections remain lost?

The problem is a lack of data and that prevents us from knowing what the gap is; genetic testing might be paramount to exploring this. For example, we know that certain types of AIDS medications aren’t as effective in African communities because predominantly European ancestry genetic markers were taken into consideration when developing the medications. It is important that the needs of the entire Indigenous community be a consideration when deciding what to do with orphaned tissue samples, and there must be extensive discussion and consent with elders across Australia, alongside Indigenous health care professionals and clinical academics.

Once these tissues are studied, it can be established from which mob the donors descended which would then enable local Indigenous groups to have an even greater pool of tissue being sampled for breakthroughs in Indigenous healthcare. This also enables the tissue to be returned to the families or communities after they have been studied to ensure that local customs are respected. The politicisation of our health care has resulted in a fear of reform and as a result it is up to us to push for reform ourselves.