possible to anonymise? DNA Database etc, Indie page 8

[[EMAIL PROTECTED] (Owen Lewis)]

> -----Original Message-----
> From: [EMAIL PROTECTED]
> [mailto:[EMAIL PROTECTED] Behalf Of Ian G Batten
> Sent: 01 September 2003 10:51
> To: [EMAIL PROTECTED]
> Subject: Re: possible to anonymise? DNA Database etc, Indie page 8
>
>
> On Fri, 29 Aug 2003, Adrian Midgley wrote:
> > Well, if the auditor asserts a right to inspect it, and decides
> to do so
> > in the full knowledge that the patient objects,
>
> Then they should be blasted all over the papers.  Obviously, the NHS and
> the BMA believe that the organ retention scandal didn't matter, as
> otherwise there'd be some slight sign that lessons were at least
> noticed, if not actually learnt.  But for as long as the staff
> (especially the administrative staff) of the NHS regard orders as an
> absolute defence, and the NHS management believe that patients have no
> rights, there will be an increasing tension over privacy.  It would be
> nice to hear the BMA or somesuch actually say ``patients have a right
> over their body and their records which is not contingent on the say-so
> of a random junior staff''.  However, clearly the NHS is there for the
> benefit of its staff, not the patients, and allowing the patients to
> have rights would interfere with that.


Can we pull this apart?

1. You and I do not own our medical records. The organisation that makes
them owns the rights in them. That you and I ultimately pay for the
organisation that owns the rights is irrelevant for purposes in hand. (This
is not a matter of opinion but of fact - we've been here before I think).

2. You and I may feel - and the organisation may agree - that certain duties
of confidentiality are owed to us in respect of our personal records.
However, these duties are somewhat vague and,IMO, are best kept so (see 5).

3. Under the law, the S of S (and those to whom he relegates his authority)
now have rights of access to our medical records, whether or not their
enquiries are relevant to our personal medical care or even whether or not
the enquiries are relevant to the care provided by the organisation the S of
S supervises. You and I may not like this but it is the law. So long as it
is the law, any claim that such actions require a specious defence of
'following orders' is simply wrong in a matter of fact. The law specifically
permits this intrusion on our privacy with no reference to us. Get the law
changed or be silent. There is no mileage to be gained from claiming
speciously that those who act lawfully are engaged in some form of
wrong-doing.

4. The law also (and for a very long time) say that when we are dead we have
no rights over our bodies and, should we have any relatives who cared about
us, their rights over our bodies are quite limited. Extension of 'rights' in
this area would be to needlessly enter a minefield. None of this gainsays
that the standard of medical ethics should always be of the highest.
Replacing ethics with legislation is only to throw fuel on a fire that can
already burn too fiercely.

5. I agree with you that the NHS has, to a fair extent, already become a
self-serving organisation. IMO, this is because of the creation of
over-large and unwieldy service centres (aka hospitals, centralised GP
practices etc.), to the point that the prime focus of the service has become
the administration of itself and not the patient care that once was once its
raison d'etre. This tendency is unhappily compounded with:

		-	Unreasonable expectations that the NHS should make free-at-point-of-use
supply or an ever-widening range of life-extending and non-essential medical
procedures.

		-	Unreasonable expectations of the human efforts of medical staff and a
willingness to sue for compensation wherever there may be the very least
excuse to do so. We must be close to the point where before being provided
with any medical treatment, it will become actually beneficial to require
the patient to sign a legal waiver of rights to sue in respect of the manner
of treatment or its outcome.

		-	Demands by some that will complicate the maintenance of medical records
and complicate and/or delay access to such records by medical staff only add
to the management overhead that is, it seems to me, the prime cause of
failure in an already over-centralised and over-managed system.

Those who demand 'patient rights' should beware. In the words of the old
Chinese proverb, they may get what they ask for.

Owen