Members of the public are wary of having their data used – even anonymously – for research purposes, whilst researchers are altogether more laid back about the proposition. That is one key conclusion of a Department of Health consultation on Additional Uses of Patient Data (pdf), published on 1 December, which found that "about …
"a mindset on the part of some officials...
"... that if the end is for the public good, then it doesn’t matter if the rules around data collection get slightly bent."
Hmm, "it's for your own good", so don't you worry your pretty little heads about it, you can trust us, we're looking after you, just enjoy the Bread and Circuses, erm, I mean go and watch X-Factor and Strictly Come Dancing..."
Oh and as for "That would appear to be joined, at the lower levels of government, by a poor understanding of the letter of the law when it comes to Data Protection", and at the higher levels of government by a complete lack of understanding (or they just don't care) that the public don't trust them with our data...!
My worry is that the data which seems anonymous now will in years (and computing power) to come be able to be cross referenced with other data and de-anonymised again.
For our own good naturally......
Human Rights are non TRANSFERABLE
Privacy is a human right and human rights are not transferable.
So YOU cannot decide that *I* waive my right to 'no punishment without judicial process' and YOU cannot waive MY right on MY behalf not to be tortured, and YOU cannot waive MY right to privacy and so on.
They may think its best based on some vague concept of 'general medical good', but then again, everyone always does until their own privacy is violated.
Once they realize the privacy violation DIRECTLY AFFECTS THEMSELVES then suddenly they start screaming stalkers, or like MPs, they're blacking out their expenses claims, their number plates, their homes from Google Street View, taking their childrens name from Contactpoint, and so on.
For example, CCTV, ask people if they support CCTV to prevent crime, they say yes. Then their neighbours put a CCTV pointing to their gardens to record noisey behaviour and they're outraged! The penny doesn't drop till they see how invasive it is to THEM personally.
I also note it's the lack of empathy. If I am a researcher checking 'Human Fin Rot' and I think I'm never going to get 'Human Fin Rot' then I don't empathize and hence don't feel the need to protect THEIR/My privacy, because I don't see it as mine.
On the other hands, if I had AIDS and was researching AIDS I would not in a million years think it was OK to start revealing who has AIDS for some greater good.
And I notice that the more broken a society is, the less empathy with their fellow man, and the more likely they are to approve invasive intrusive privacy violations.... just as long as in their minds, it's EVERYONE ELSE that is the subject.
So to me, the less a society understands the fundamental rights, the more broken they are, the more fragmented, the more incohesive a society is.
Well, a postcode can cover a few dozen addresses.
Likely to be several children of any given age within one two-part postcode. Hundreds if you only use the first part.
What About Racial Minorities?
And how many of those children will be, say, black?
See the following comment: http://forums.theregister.co.uk/forum/1/2009/12/17/consent_and_data_research/#c_651106
NHS "patient audit"
We recently received the NHS "patient audit". A couple of little old biddies I know assumed they *had" to fill it in, others asked the local doctor or nurse and were told to fill it in - they likewise assumed it was mandatory. Only when I told them (when asked) that it said it was on behalf of the NHS but went to the address of a private company, was not mandatory and there is no guarantee this information would be kept private (conditions on the form allowed the processor to pass details to "relevant third parties") did they finally realise they had been conned - they all promised to shred them next year...
Not sure if ti was actually on behalf of the NHS or not - they would not talk about it to me and hung up when I got through to someone in the know.
earthshattering news at nine!
"Members of the public are wary of having their data used – even anonymously – for research purposes, whilst researchers are altogether more laid back about the proposition."
Did they pay much money for that conclusion? I'd have told them that for a pint.
But my research show that you're a cheap tart...
Paris, the most expensive....
MASS RACIAL DISCRIMINATION!
Right at the top of the "Lifestyle Behaviour Review", I quickly spotted a clear case of mass racial discrimination.
Just look at the few questions in the "Personal Details" section, right at the start of the form: gender, post code, ethnic group.
So, there's a black girl in year 8 who lives in such'n'such a postcode who...
Basically, members of ethnic/racial minorities will have a lot less anonymity than the ethnic/racial majority. That's mass racial discrimination against all year 8 pupils - and their families - who happen to be in ethnic/racial minorities.
That really is an utter outrage. All those responsible should, at the very least, be immediately suspended, subjected to disciplinary action, and, if found liable, sacked. The main culprits should be prosecuted. There is absolutely no excuse for such reckless, racially discriminatory gross negligence. It took me mere seconds to realise the implications of those first few questions, and it's not even my job to check such things!
I think I'll just pay a visit to the EHRC website (http://www.equalityhumanrights.com/) and see how I report this clear case of mass racial discrimination...
Inexperience, poor education, and stupidity
One of the less obvious features of online forums: requests from university students to "visit my website and fill out my survey."
Clearly, the instructors of courses under which surveys are being compiled have failed to explain a few basics of surveying to the students, to wit:
* Surveys with self-selected respondents are subject to an unknown bias and may give results wildly different from a properly constructed random sample, hence any conclusions drawn cannot be trusted.
* The students invariably fail to state the institution, the course, and other details that provide bona fides. Taken at face value, you cannot be sure that the person running the survey isn't some sort of scammer.
Given the penchant of British government at all levels to hire incompetents, it seems likely that the "researchers" who want to abuse patient privacy simply don't know what they are doing, and any results they obtain will be of dubious significance.
Even when a medical or social sciences research project has all the right bells and whistles - double-blind, perhaps matched participants, fully informed patient consent, care in statistical analysis - a great many of the end results prove on review to be complete nonsense. Getting a survey or statistical study right even under ideal conditions isn't easy. Mass digestion using Excel of data collected for other purposes and of unknown quality is not an acceptable technique, but I bet in many cases that's what's being done.
Corrupt the database!
Whenever I fill out such forms, I lie thru' my teeth (where possible) ... For example, when I use my so-called "Club Card", Safeway (Sainsbury's-ish grocery chain here in the US) thinks I'm a one-legged black lesbian lumberjack, born on February 29th, 1904, who commutes to the Pacific NorthWest from the SF Bay Area on roller blades ... and etc.
Not that I shop at Safeway very often ... Horribly high prices for inferior produce, and most everthing else is priced higher than any comparable chain. Probably why their profits have been slipping.
classic online humor
'little bobby tables we call him'
So much of this is really about trust. A couple of decades ago, if you'd have been given a survey and asked to fill it in by the Doctor, you'd probably have done it. The Doctor, in most peoples experience was someone they could trust, and if no name was asked, what was the problem. Even private enterprise was more trusted; a company asking your opinion of their service probably wouldn't even ask for name, postcode etc.
Wind the clock forward and it's all changed; virtually no-one is trusted, for the perfectly good reason that 8 times out of 10 that trust is in some way abused. Whether it's some health authority knocking up behaviour profiles on the quiet, or a business selling on your details of behaviour to marketers. The greedy and arrogant just can't keep their fingers out of the pie.
Thanks in part to phorm and the NHS (sounds odd in one sentence!), I now object to pretty much every use of my data or behaviour that isn't explicitly laid out for me to consider and give my assent to. Most I'll never know about, and that really does piss me off.
Till we get an enforceable, tough policy for data use that returns control to us, I'll object to every use, good or bad, and actively try to avoid them. If we can't be trusted to make our own informed decisions, why should we trust those of others?
>And I notice that the more broken a society is, the less empathy with their fellow man, and the more likely they are to approve invasive intrusive privacy violations.... just as long as in their minds, it's EVERYONE ELSE that is the subject.<
Needed repeating. I did thumbs up but always click back, so not sure it it shows.
>Whenever I fill out such forms, I lie thru' my teeth (where possible)<
Heh, same here.
As for human rights, is there such a thing, or do they change on the whim of the current administration? Are the Chinese population afforded the same human rights as USA citizens? If human civilisation were based on justness and empathy would we even need a bill of human rights?