Big Brother is coming for your urine

George Orwell was so naive ! The reality in 2011 is that the government is coming for people’s blood and urine samples, in what is called the Australian Health Survey. What happens is that 50.000 people, including children, are randomly chosen by the Australian Bureau of Statistics to give personal information for this survey, by having them answer questions from an ABS representative who comes to visit them in their home, by having everything from blood pressure to waist circumference measured, and by being asked to provide blood and urine samples (this is currently optional, but doing the survey is not, people are threatened into compliance with fines of 110.- per day).

Now, to be clear, I do think that it is important that governments keep up to date with health trends and developments, but I have a few huge issues with this survey.
Firstly, transparency. If you read the Australian Health Survey FAQ, it says that your results are not accessible by insurance companies, employers or family members. But it also says that you might be contacted by the company who processes your blood and urine samples, if they find anything abnormal. So your results are tied to your name. I am not reassured at all that my information will not get into the hands of interested parties. Also, we don’t know what tests are being run on these samples, the ABS is not telling us. Will there be genetic testing of any kind, say for cancer susceptability or the presence of inherited deadly diseases like Huntington’s ? What if I don’t want to know whether I have that gene defect ? It’s all very unclear as to what happens with these samples.

Secondly, I have a few methodological problems with the AHS. Will 50.000 out of 22 million really give a reliable picture ? And how “random” are these 50.000 people chosen ? To get proper data about disease prevalence and morbidity, you can’t be too random, because you will miss things. City vs country, young vs old (for example, I live in the second-largest growth area in Australia, lots of young people with completely different disease patterns as compared to, say, a typical city suburbia), Asian vs Caucasian, to just name a few. Apparently they will test Cholesterol levels in the blood. But who is going to fast for 12 hours just for that ? We’ll end up with a gazillion false positives. Oh, and whose BP won’t be raised while being asked stressful personal questions by a stranger ? Everyone knows that we can not draw conclusions from isolated blood pressure measurements, so why does the AHS ?

Surely there are better ways to do a survey like this than to make it compulsory for a random group of people, intrude into their homes to have them answer a million of private questions, and then ask them to provide urine and blood samples without saying what these will be tested for. This is just ridiculous. Seems to me the ABS is trying to win the George Orwell prize for most blatant case of privacy intrusion.

From the AHS page :

What sort of questions will the interviewer ask?
There are some general questions about your age, birthplace, employment, income and education; these add vital background to the key questions in the survey, including:

Your health
· Long-term health conditions
· Visits to doctors
· Medications
· Injuries and other health problems
Physical activity
· Exercise
· Sport and leisure activities
Diet and nutrition
· Food
· Drink
· Supplements
Body measurements
· Height
· Weight
· Waist
Blood pressure

Again, we are not told what questions exactly will be asked, like we’re not told what tests are being run on our blood and urine samples. This kind of secrecy and lack of transparency is just completely unacceptable. I’m surprised that this is not the subject of legal challenges yet. It should be.

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