Is the National Indigenous Health Survey ethical?

Is the National Indigenous Health Survey ethical?

There is a National Aboriginal and Torres Strait Health Survey conducted by the ABS that collects data from 6500 households about many different aspects of health and lifestyle. This survey provides crucial data for researchers, health organisations, policy makers, and the media in better understanding the issues affecting Aboriginal and Torres Strait Islander families and developing solutions to address these issues.

“The NATSIHS includes questions about:

• General health and wellbeing (including disability status)
• Health risk status (physical activity, smoking, dietary behaviour, alcohol consumption)
• Diagnosed conditions (focusing on the National Health Priority Areas of asthma, cancer, cardiovascular and circulatory conditions, arthritis, osteoporosis, diabetes and high sugar levels, kidney disease, as well as mental health conditions)
• Cultural identification
• Experience of Discrimination
• Social and emotional wellbeing
• Physical measures (blood pressure, weight, height and waist size). This part of the survey is voluntary.
• Voluntary hearing test.”

The use of ‘voluntary’ for two parts of the test suggests that the rest is involuntary, and it is, but it doesn’t talk about what happens if you refuse to participate.

I’d never actually heard of the survey before or given it much thought, but at the same time I have no doubt I would have used data from it in my research and writings on multiple occasions.

So what’s the problem then? Essential research that provides a highly detailed snapshot of Indigenous health? The problem is how it is enacted, and promoted.

There are no shortage of stories available about the risks for those Aboriginal people who already face financial hardships that can arise from unpaid fines.

There are videos from ambassadors, FAQs on the ABS website, and other promotional resources available encouraging Indigenous people to participate if their household is randomly selected. What is missing in all of this is the information that says failure to comply in the research can result in fines of $210 per day.

There are no shortage of stories available about the risks for those Aboriginal people who already face financial hardships that can arise from unpaid fines.

I’ve had a couple of people contact me so far who were ‘randomly’ selected to participate in this survey so far. From their version of events, it seems as though ‘randomly selected’ basically involves a person going door to door asking if there are any Indigenous people there, and if you say yes you are then legally compelled to participate in the research. The ABS website says that “Once your household has been selected, another household cannot be substituted in its place, as other households have already had their chance of being selected, and this could mean that some parts of the community are under or over represented.”

This bit doesn’t make much sense to me if the method for selection is door knocking until their quota for a given region is full. If my house says ‘no’ then just keep going until you get enough who say ‘yes’. It seems more like a timesaving effort than a data integrity issue?

Also, on the ABS website FAQs under the heading ‘BEWARE OF SCAMS’ it says that the “ABS always makes initial household contact in writing to advise that you have been identified for survey participation”, but whether these letters were just not noticed, or never received is impossible to confirm, but the suggestion that ABS surveyors are door knocking up and down the street looking for Indigenous people, it seems plausible that no letter was received, unless the letters are sent to all households in the area, Indigenous or not. Certainly, according to the people I spoke to, they seem confident no such letter was ever received. They are adamant the first point of contact was a door knocker, and the first letter received was the one I have screenshotted below.

I mention the ‘Beware of scams’ section because one frantic phone call I had with a young man concerned his mother being approached to participate in the survey by someone knocking on her door who, as it was told to me, said that she had to let them in her house to conduct the survey. She refused and was told she would receive fines for failure to comply. The young man in question said he went back home to stay at her house for a few days out of fear they were not from the ABS and would come back to his mum’s house. There was also a tweet shared by Indigenous health researcher and academic Dr Chelsea Bond, about a letter received by her mother-in-law in a previous survey.

My mother in law received a letter threatening a fine the last time they did this survey…she grew up under the act and was extremely distressed abt the intrusive questions (including body measurements). As a researcher I was horrified by how she was treated.

— chelsea bond (@drcbond) November 9, 2018

participation in the survey is optional, until you say ‘no’ and they request your participation in writing, which they do if you say ‘no’

Having looked at a copy of a letter sent to someone who said they didn’t want to participate, and talking to them about their experience, it seems the way it works is that participation in the survey is framed as being optional, unless you say ‘no’ and they request your participation in writing, which they do if you say ‘no’. Which means it is not really optional at all.

Once you have been sent this letter in the mail, you are then told your participation is mandatory, and that failure to comply with the requested data can result in fines of up to $210 per day until you do.

A copy of the letter sent to Indigenous people who do not wish to participate.

That bit isn’t mentioned on the website, although it does say that it is compulsory. It fails to mention the risk of fine though.

WTH?! This is not ethical practice. This is direct breach of prior informed consent. Research ethics 101. This is coercion and duress. Hardly participating by choice and informed consent.

— Marlene Longbottom (@MLongbottom13) 9 November 2018

I’m not an expert in research principles, but I know enough to have a basic understanding of ethics in research and harm minimisation principles. I also know that the two people who have contacted me about this have suffered anxiety and frustration both at the thought of being compelled to participate, and at the thought of having to pay fines for failure to do so. As mentioned, we have all heard stories of the worst case scenarios of Indigenous people dying in custody when they were only in for unpaid fines to begin with, but even if it doesn’t go that far, for single mums, people on the pension etc the potential loss of $210 or multiples thereof, could have a devastating impact on their lives.

The idea of collecting a snapshot of Indigenous health in a fashion
that runs the risk of contributing to ill health is something that just doesn’t sit right with me.

Our mob aren’t stupid and we care abt our health. Our ppl should not be decieved or compelled to provide intimate information abt themselves and their families in the interests of ‘research’

— chelsea bond (@drcbond) November 9, 2018

As the stories I have been provided are anecdotal, and a number of my concerns I cannot find clear information on, I have a number of questions for the ABS I would like them to address:

• Do they advise in writing in advance (in accordance with their ‘avoiding scammers’ process) that they will be door knocking to inquire about occupants’ Indigeneity?
• Is it at the point of confirming one’s Indigeneity that a household is then legally compelled to participate in the NATSIHS?
• Is the financial penalty consistent with other compulsory surveys?
• Have they issued fines as a result of households refusing to participate in the NATSIHS? If so, how many?
• In households were there is more than one adult in the premises, who is issued with the fine?
• What is the consequence for a household if they refuse to pay the fine?
• Are there any legitimate grounds for which a household can legally not participate in the NATSIHS?

I hope this issues can be swiftly addressed, because Indigenous people need clarity on this process, as do the people lending their names to promote it, and the researchers who rely on this information should also be aware if the methods used to collect it involve any duress or duplicitous approaches.