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Re: [Gnumed-devel] Family History tables

From: Karsten Hilbert
Subject: Re: [Gnumed-devel] Family History tables
Date: Thu, 9 Jun 2011 09:36:52 +0200
User-agent: Mutt/1.5.21 (2010-09-15)

On Thu, Jun 09, 2011 at 12:02:59AM -0700, Jim Busser wrote:

> My younger sister and I are both patients in your praxis.

Now we are getting to the heart of the question I posed.

> You are my doctor, and my fictional sister is looked after by Dr Leonard 
> McCoy ("Bones").
> My sister's last name is different from mine. In fact, it
> is unknown to you and McCoy that we are siblings. We are all
> living in a good size city and did not even know we are
> getting care in the same praxis. (Imagine that my sister and
> I are not friendly because I used to date her girlfriend but
> dumped her because she is crazy so now neither of them talk
> to me.)
> Each of us are asked if there is a family history of any
> disorders. We each say that our mother developed diabetes at
> 52, but we did not name our mother. Does GNUmed wish to
> require a name, or does GNUmed want to have a way to enter
> this information without creating a new person "mother".

By Richard's design we should be able to enter this as:

- maternal history of diabetes

I agree. This particular FHx record will NOT be linked to a
fake relative in the database.

My question was: When you sister comes and tells me the very
same thing: "mother diabetes at 52" it is technically
possible to search for your record of "mother diabetes at
52" and also link your sister to that. That would only
create one row. In that case, when your sister comes back
and says: "Oh, no, it was at 62" and I change that it will
automatically show up with *your* record as well.

Or else a duplicate row could be created and linked to your
sister. That would then NOT carry over modifications.

It is not unimaginable someone totally unrelated to you our
your sister coming along saying "now, *my* mother developed
diabetes at 52" - in which case one would obviously want a
new row and not link to your's and your sister's row -
because one most definitely does not want changes on your
row carried over to them.

> What happens if I tell you that my mother, Maria Zapato,
> developed diabetes at 52? Maria could be created as a
> person, and the information that she developed diabetes at
> age 52 added.

Either that or else add her name to the non-person-linked
FHx row.

> Do we want to be adding health information into the file
> of a person based on what other people tell us about that
> person ?

Rather not, perhaps.

> Suppose we get a phone call from the local hospital
> that Maria is in the hospital casualty department, do we
> know her and someone looks her up in GNUmed and says
> "apparently, she has a record with us and all we have is
> that she got diabetes at 52".
> I think that is a problem.

Unless it is true.

> Suppose instead that Maria was *already* in the praxis,
> existing as a person with a history that includes diabetes
> and other disorders, maybe thyroid and diabetes and she had
> an abortion at 38 because she had an affair. In this
> scenario, when I tell you about my mother, you ask me my
> mother's name, in case she exists already in GNUmed, and you
> find her. Therefore you somehow link her to me as a family
> member, perhaps
>       mother of son
> and I am
>       son of mother
> But do we really want me, the son, to be able to know
> things about my mother that she never approved anything to
> be told to me?

That's what I meant when I said "confidentiality
implications" in my previous mail.

However, health issues of your mother marked .confidential
would not be shown in your record.

> When my sister (who hates my guts - not really) tells her
> doctor the same information about Maria, does her doctor
> discover (which maybe my sister and I did not know) that we
> are both in the same praxis? I would find it very strange
> after I told my doctor my mother's name and the doctor says
> "isn't that interesting? I imagine you must have a sibling
> named Jane Moneypenny?"

Indeed. But it is inappropriate of the doctor to say so.
GNUmed is not a tool to enforce appropriate behaviour.

It would, for example, be appopriate to ask: "Do you have
any siblings ?"

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