Health survey sparks 'Big Brother' fears
By Nikki Tugwell, ABC News Online Investigative Unit
Updated October 25, 2011 15:54:23
Two participants in the Federal Government's compulsory Australian Health Survey say the experience has been deeply intrusive and a stressful violation of their privacy.
A Queensland woman likened the survey process to having Big Brother knocking on her door asking for urine, and said the line of questioning intruded into her grief over the recent death of a loved one.
And a Victorian woman told the ABC News Online Investigative Unit she felt strong-armed into giving private health and lifestyle details to a stranger.
Up to 50,000 randomly selected adults and children are compelled to take part in the survey, which is being conducted by the Australian Bureau of Statistics in consultation with the Department of Health and Ageing.
Aspects of the survey, such as blood tests and urine samples, are submitted voluntarily, but people can be fined $110 a day - or prosecuted - for not taking part or for refusing mandatory questions.
It's not like Big Brother is just watching. He is knocking on your door asking for urine.
a Queensland woman on taking the Australian Health Survey
The survey, announced in last year's Budget, was described as the most comprehensive research on the health of Australians ever undertaken. At the time, the inclusion of blood and urine sampling sparked headlines such as: "It's the ABS: Come out with your urine sample in the air."
The survey participant from Queensland, who wishes to remain anonymous, says she was deeply uncomfortable with the nature of the questioning.
"I'm shocked that anyone would want a blood and urine sample just out of the blue,'' she said.
"I haven't even given my doctor that sort of thing for a while because there is no need for it.
"Why should the Australian Government know more about my health than I do?
"It's not like Big Brother is just watching. He is knocking on your door asking for urine."
The Victorian participant, who also wishes to remain anonymous, says she was uncomfortable with the interview being conducted in her home and initially sent this email to the ABC.
She said she had initially believed all the survey questions were compulsory.
"I was given the impression that I had to participate in the survey, which I understood to mean that I had to answer all of the questions," she said.
"I felt it was just an absolute violation to send somebody from the Government into my home.
"I don't doubt the information is valuable and I can see the need for collecting it. My issue was the mandatory nature of it. She was utterly non-sympathetic and not understanding of why I didn't want to participate and then threatened me with fines.
"I checked the fine print on the ABS website to see if I really could be fined and I checked my legal position on it.
"In the end I thought, this is too hard, and just did it.
"At that stage I was so annoyed and stressed about it; I raced through it, brushed her off, and wasn't concerned about the accuracy of it because I wanted to get rid of her."
Confiding in strangers
I was thinking, 'you're a stranger, I don't particularly feel like confiding that in you'.
Australian Health Survey participant
The survey commenced in March, and about 15,000 people have completed interviews.
The ABS says about 60 per cent of those interviewed have agreed to provide blood and urine samples - and to date no fines have been issued.
"At what point do we have any privacy left?" the Queensland participant asked.
"They say that they don't force you to let them into your home but the only other option is to answer these sorts of questions outside your house where your neighbours can hear.
"I said, 'I really don't want to take part in this survey'. I'm not comfortable answering medical questions with a stranger."
She says she was asked if she had experienced the death of a loved one recently, and then was asked to rate her level of sadness on a scale.
"I was thinking, 'You're a stranger, I don't particularly feel like confiding that in you'," she said.
"Then they pulled out a tape measure to take my body measurements."
Confidential data
You Said It
The ABC called for feedback on the Australian Health Survey via Facebook. Here's a snapshot of the discussion:
Jess Scott: "I'm surprised it's compulsory! Research like this is extremely valuable but, ugh, being forced to do something isn't nice."
Adam Griffin: "I don't get it. What exactly is the problem? So you have to give a few samples. Get over it people, it's a small effort that you could make that has the potential to improve the way we provide health care services to those that need them."
An ABS spokesperson told the ABC it had received mixed feedback about the survey, with some respondents saying the subject matter was too personal.
The ABS declined to supply the full list of questions to the ABC but said it balanced the need for the data with the burden that supplying information placed on individuals.
"The ABS is aware of the sensitivities around conducting this type of survey,'' the ABS spokesperson said.
"People who participate will be contributing information that will guide future healthcare policies, guidelines and public health programs that will benefit them, their families and the community for years to come.
"The voluntary biomedical measures will provide new insights into chronic conditions such as diabetes as well as heart, liver and kidney conditions.
"The answers to questions asked by the ABS are treated confidentially."
The ABS says most people prefer to conduct the survey at home.
"For those who would prefer to not invite the ABS interviewer into their home we will make other arrangements such as conducting the interview on the doorstep or finding a meeting room at a nearby library, council office, etc.,'' the spokeswoman said.
Not all participants in the survey report a negative experience. Brigid Walsh from Victoria told the ABC she had no problem with the questions and readily participated in all aspects.
"By and large, I was pleased with it, and the ABS was doing it, but I can see some areas where people might be picky,'' she said.
"I regard the survey as important and the ABS has a good reputation."
Email from Victorian participant
Following is the full text of an email to the ABC from the Victorian participant:
I participated in this survey and I DEEPLY resented the intrusion into my home and privacy - to say nothing of the threat of fines should I refuse to participate.
I respect the need to acquire information of this nature and I have absolutely no objection to anonymously sharing my details; I do believe that my responses will inform important health-related policy decisions.
However, I think it was a mistake to set the survey up in such a rigid and intrusive format and I would encourage the ABS to consider that the least they could do when mandating participation is to cause the least possible imposition on those who are selected. Instead, I felt strong-armed into reporting on private health and lifestyle details in the presence of a stranger - who assured me the information was anonymous as she sat in my house, addressing me by name!
Had there been an option to participate (truly) anonymously online, at a time that was practical for me, I would have done so and would have been much more likely to provide accurate and complete answers. As it was, I was so keen to be rid of the ABS representative that my responses were clipped, not considered and very likely inaccurate. I am a very private person and this was a source of genuine stress for me.
I support the need to gather information of this nature, [Ron: Why?] but I object to the manner in which the ABS goes about it.
http://www.abc.net.au/news/2011-10-25/australian-health-survey-raises-privacy-fears/3598864
