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
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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
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