This genetic stuff: I have some direct personal experience of it. To
illustrate this I will reveal sensitive data about myself onto this list.
While I would appreciate that this remains on the list and confined to its
users I recognise that it is also web published. I simply ask for it to be
used as an example, and depersonalised if it is intended for wider
circulation.
My family has a history of Parkinson's disease. My father's father died of
it, my father died of it and his sister died of it. As a coincidence her
husband died of it.
It is not known whether there is a link in heredity for this ailment, and a
cure does not seem any nearer that when my father died over 20 years ago
despite energetic research into the causes. The disease is unpleasant,
debilitating and one of the set of diseases where the sufferer remains
mentally alert while becoming progressively more physically unable to
function well.
My point is personal. I have absolutely no interest in knowing if the
disease is inherited or has other causative factors. If my father had been
estranged form the family I would have no interest in knowing he had the
history of this ailment. I had no qualms about fatherhood, though did
discuss this with my wife first. She had no qualms either. Our son has no
qualms about the possibility of heredity. I may suffer form this in due
course. So may my son. Or we may not.
I would have seriously resented any nosy parker busybody giving me this
information if I had not known it already. In fact I would have considered
action against them for causing me emotional hardship. At the very least I
would have removed them from my Christmas card list.
I felt we might all like to look at this for some "balance".
Tim Trent - Consultant
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-----Original Message-----
From: This list is for those interested in Data Protection issues
[mailto:[log in to unmask]] On Behalf Of ianwelton
Sent: Tuesday, May 25, 2004 10:05 AM
To: [log in to unmask]
Subject: Re: [data-protection] Info Sharing Flowchart (was Terminal genetic
illness)
Graham Smith on 24 May 2004 at 20:40 said:-
> To be honest, if I had inherited such an incurable condition, then I'm
> not sure I'd want to know...
Unless of course a cure was found whilst you were still in good health. A
strong possibility with the speed genetic research is stated to be
progressing.
Then to be cured, someone would need to know you had that illness and about
the cure.
I quite agree there is no simple answer and that a strong focus on the
individual and their wishes, communication, effective and strict use for the
tightly defined purpose together with confidentiality of data, rather than
an approach focused on one social groups perspective or another are all
wrapped up in this.
I equally agree that in much of today's environment such a situation is
extremely difficult if not impossible to achieve, and as a result, many may
opt to manage the data themselves, or not to know, rather than have to cope
with the difficulties caused by such knowledge being available for use
elsewhere. A sad reflection of the state of affairs, but one which should
remain an option in any free society. Data Protection has little to offer as
a means of counteracting such perceptions in an environment where it is
increasingly being utilised to logically share data for the good of the
social group(s) rather than to protect the individual.
Ian W
N.B. Along not dissimilar lines, some individuals will not have blood
transfusions on religious grounds, so the NHS should have a policy
implementing that viewpoint and allowing people to die even where a blood
transfusion would save their lives. You could question if that was the
individuals, or the social groups view, but it would require respecting
unless negated by the individual.
> -----Original Message-----
> From: This list is for those interested in Data Protection issues
> [mailto:[log in to unmask]] On Behalf Of Graham Hadfield
> Sent: 25 May 2004 08:17
> To: [log in to unmask]
> Subject: Info Sharing Flowchart (was Terminal genetic illness)
>
>
> Colleagues,
>
> I've been involved for some time in an Information Governance
> Group locally, mainly NHS and the Social Care side of LA
> work. In February/March we ran some training sessions around
> information sharing decisions with other practitioners (NHS,
> social care, education, police, fire service etc).
>
> Following on from those sessions was the development of a
> flowchart of the general questions to ask/steps to go through
> in making such decisions. Some of you might find it useful.
> The flowchart is on our web site at:
> http://www.redcar-cleveland.gov.uk/YrCounc1.nsf/Web+Full+List/
> AD4D1221F7D4055B80256E770041D54A?OpenDocument
>
> Regards,
> Graham
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