Aboriginal kids a no-go zone for health census

As a young top-end medical researcher in the 1990s, my mentor taught me that presented with information in an appropriate way; Aboriginal Australians were perfectly capable of making their own decisions. In 2011 we appear to be forgetting those lessons as fast as we learn them.

Next year's National Health Survey will randomly interview 50,000 Australians and offer a sub-sample of those interviewed the option to provide blood and urine samples. Every Australian that is, except Aboriginal children who make up almost 40% of Australia's Indigenous population. In a glaring throw-back to the era of the Aboriginal Protector, special advisory groups have decided that all Indigenous kids are to be excluded. Apparently they can handle the survey questions like the rest of us, but not the provision of blood and urine samples. These experts have removed the rights enjoyed by every other Australian; to contribute through the provision of samples to an accurate picture of Australia's state of health.

That sounds pretty racist to me. Consulting on how to do things is appropriate, but I won't stand for national institutions like the Australian Bureau of Statistics being told by expert panels that Aboriginal children are off limits. Sure we can look at different ways to do things, but a 'black ban' is something that we should have consigned to ancient history.

These five expert groups making this determination include the National Indigenous Health Equality Council, the National Aboriginal and Torres Strait Islander Health Officials Network and the National Advisory Group on Aboriginal and Torres Strait Islander Health Information and Data. None of them are household names. I doubt if any of their members have ever lived in the squalor of central Australia or know just how critical it is to gain an accurate snapshot of blood profiles, nutrition levels and renal function. For the rest of the world, the inclusion of sampling in a national health survey is gold standard. In Australia, that opportunity is being denied to the cohort with most to gain.

The people who really matter in this debate are the Aboriginal children whose long term health outcomes are at risk, their parents who have been denied the opportunity to have their children included in the survey and also the Australian taxpayer who is forking out billions trying to close the gap in Indigenous disadvantage.

It is telling that when contacted directly, a number of these committees indicated that they never advised anyone that blood and urine testing was 'culturally inappropriate' for indigenous children. That is significant because 'culturally inappropriate' was the precise grounds advanced by Minister Snowden's office this month to justify the exclusion.

Aboriginal parents have been consenting to blood and urine tests by doctors, nurses and research ethics committees for decades. So it is hard to see why it is suddenly so culturally inappropriate that kids must be excluded. Sure some parents might refuse, but plenty more will participate. It is up to the Australian Bureau of Statistics to ensure the sample is adequately stratified and representative. The results are too valuable to pass up.

Such a position has wedged the ABS, which is now compelled to assure us that this exclusion won't lead to an information gap on Indigenous children's health. How curious, because the same ABS remains determined to include indigenous children in the 2017 Survey. So testing kids later this decade is vital, but a baseline while we are investing billions to 'close the gap' isn't.

The people who really matter in this debate are the Aboriginal children whose futures rely on evidence-based social policy. In contrast, it is the Government's gain if bad news goes missing. There is no surer way to ensure that happens than never collect data in the first place.

Right now, Australia appears so paralysed by panels, paperwork and paternalism, that it will be another six years before Aboriginal parents enjoy mainstream decision making privileges. Worse, it may be even longer before taxpayers learn about the true state of Indigenous children's health. Minister Roxon can undo this mess with a single telephone call to the ABS, but that call won't happen if government fears what such a study may uncover.