For me, I am all in favour of good data, and I don't mind being part of it myself. I am fairly relaxed about anonymisation. I can't see why anyone would be interested in me as an individual, except as a marketing 'target'.

But I realise other people will feel differently, and may even feel that I am being naive. Some social policies must allow opt-out, and this may be one. If opt-out is allowed, it should be easy and transparent. It seems like this one is not. That, for me, is the main item of concern, although the wider debate is indeed interesting.

I feel that Radical Statistics should stand up for good data and widespread social obligations, but should oppose data commodification. Therein lies the key tension, n'est-ce pas?

JOHN BIBBY

On 30 January 2014 12:07, John Whittington <[log in to unmask]> wrote:

At 10:49 30/01/2014 +0000, John Veit-Wilson wrote:

Could we please distinguish two separate issues here. [1] I don't want my personal confidential medical records mined [licitly or illicitly] by profit seekers to identify me to sell me things or exclude me as too risky etc etc; [2] I want appropriately anonymised data of this kind to be open access. I may not be alone in seeing this distinction which seems to run through the thread. What should I do now -- tell my GP or do nothing?

Indeed. I must say that I'm having difficulty in understanding what the 'fuss' is all about - there seems to be some knee-jerking in response to a hint of Big Brother afoot! I would think (and hope) that the great majority of people, particularly those reading this, would agree with John's [1] and also with some variant (such as the controlled availability system proposed) of his [2] - the latter to facilitate research, in particular the collection of 'optimal' statistics.

The main concerns presumably relate to [1]. However, even the most Mickey Mouse of 'pseudo-anonymisation' systems surely ought to be good enough (other than in some rare and very individual-specific circumstances) to prevent insurance companies and/or 'those trying to sell' to ascertain with any certainty the name and/or address of the individual to whom particular data related? If so, what's the problem?

Speaking personally, all that concerns me is that the pseudo-anonymisation is adequate to prevent the things I don't want to happen - so should not it be reassurances about that (if anything) that we were 'demanding? One hopes that kit is being done competently, but I suppose we cannot 'assume'! For example, my full postcode (which I sincerely hope would not be 'shared'!!) and gender would identify data as belonging to one of only two possible individuals (and two possible addresses), who could be distinguished from one another on the basis of age group, ethnic origin or many other factors!

Kind Regards,

John

----------------------------------------------------------------
Dr John Whittington, Voice: +44 (0) 1296 730225
Mediscience Services Fax: +44 (0) 1296 738893
Twyford Manor, Twyford, E-mail: [log in to unmask]
Buckingham MK18 4EL, UK
----------------------------------------------------------------

******************************************************
Please note that if you press the 'Reply' button your
message will go only to the sender of this message.
If you want to reply to the whole list, use your mailer's
'Reply-to-All' button to send your message automatically
to [log in to unmask].
Disclaimer: The messages sent to this list are the views of the sender and cannot be assumed to be representative of the range of views held by subscribers to the Radical Statistics Group. To find out more about Radical Statistics and its aims and activities and read current and past issues of our newsletter you are invited to visit our web site www.radstats.org.uk.
*******************************************************