I am forwarding this to the list, since I think this is an important discussion.
Sam Heard said:
Tom
The donor is definitely anonymous in most settings. The fetus can be part of the mother - this is a bit like the local terminologies in archetypes - we need a way of saying that the relationship is the only defining feature and there is no ID.
Cheers, Sam
Doesn't it depend on the legislation of individual
country and religiuos belief??
Do we also apply the same rule to Blood Donors and
solid organ donors.
ANIKET
Dear All,
Just a couple of use cases for the discussion:
1. If prenatal diagnosis is being done by chorionic villus sampling
(CVS) in a twin pregnancy (which does happen) then it is the placenta
- or rather the placentas - which are sampled. Each placenta has a
DNA genotype matching that of the fetus attached to it (ie not the
mother) as the placenta is an extension of the fetus. If however the
fetus is an extension of the mother, then are we really saying we
like the idea that the placentas may have to appear as multiple
"temporary" organs of the mother, which are different in every
pregnancy, and which never share her total genotype? A likely outcome
would be selective termination of one twin (the affected one, on the
basis of a molecular finding and either a makable or a confidently
predictable clinical diagnosis) leaving the unaffected one to go to
term. Thus a part of the mother is diagnosed clinically and
molecularly, findings which are important for the mother later on, in
that they'll trigger appropriate care next time around, but which
*must not* be confused with her own clinical diagnoses or test
results.
2. Bone marrow transplantation, where it may be necessary to
distinguish that the post-transplant patient may still have a
haemoglobin variant, but a different one to the one they were treated
for, and accordingly no disorder to go with it, but will still be
genetically as they were before the treatment in every other organ.
Also the donor was most probably selected from the same family, so
confidentiality may be slightly different...?
It seems to me that we can either organise our concepts to make this
kind of record easier and more obvious, or we can begin to inbuild
problems for later on (eg if the fetus is part of the mother, having
to explain to all our knowledge agents that this might not extend to
genotypes, or if it does, then by chance rather than biological
imperative etc...). In the event of one of two fetuses being
affected, and one pregnancy being terminated, what is the result in
the record to indicate the original number of conceptions, the fact
that a genetic risk actually produced a fetus with a prospective
problem, and the DNA and other data originated in the process of the
testing of the CVS sample? It would be wrong, I feel, to treat the
fetus' diagnosis as one of the mother, as confusion here could lead
to all kinds of erroneous conclusions (one fetus had sickle cell ->
mother - who is actually just a carrier - has sickle cell...?).
Just some thoughts!
Yours,
Matthew
Matthew
Great scenario's
1. If prenatal diagnosis is being done by chorionic villus sampling
(CVS) in a twin pregnancy (which does happen) then it is the placenta
- or rather the placentas - which are sampled. Each placenta has a
DNA genotype matching that of the fetus attached to it (ie not the
mother) as the placenta is an extension of the fetus. If however the
fetus is an extension of the mother, then are we really saying we
like the idea that the placentas may have to appear as multiple
"temporary" organs of the mother, which are different in every
pregnancy, and which never share her total genotype? A likely outcome
would be selective termination of one twin (the affected one, on the
basis of a molecular finding and either a makable or a confidently
predictable clinical diagnosis) leaving the unaffected one to go to
term. Thus a part of the mother is diagnosed clinically and
molecularly, findings which are important for the mother later on, in
that they'll trigger appropriate care next time around, but which
*must not* be confused with her own clinical diagnoses or test
results.
This example is a very good one - it shows that there is a need to identify
the fetus over and above its relationship with the mother. I have suggested
that we use a local label for this - could be LOCAL:Twin1_2002. - the
relationship for the information is FETUS. The important thing here is that
we have the idea of subject of care - a unique identifier (or self) and the
relationship.
The sampling is the taking of a histological sample of a body part - the
subject is the FETUS. There will be a procedure record, a sample and a
histological report - all with the fetus as the subject of care for the
data - in a composition that is part of the mothers EHR. It may be copied to
the child's EHR in the future - I have thought about the transform required
to do this and it should be relatively easy if the relationship of the two
records is stated first.
2. Bone marrow transplantation, where it may be necessary to
distinguish that the post-transplant patient may still have a
haemoglobin variant, but a different one to the one they were treated
for, and accordingly no disorder to go with it, but will still be
genetically as they were before the treatment in every other organ.
Also the donor was most probably selected from the same family, so
confidentiality may be slightly different...?
Interesting - who is the subject of care then? I guess this will be deduced
from the data - I do not think that we can say the origins of all the states
in a person that arise following a donation - at times it may be ambiguous
(graft v host).
We have considered 'donor' to be the relationship - but the person may have
a relationship with the person apart from this? I do not think that the
subject of care needs to be the donor then - it can be the family member as
it is known who they are. Interesting!
It seems to me that we can either organise our concepts to make this
kind of record easier and more obvious, or we can begin to inbuild
problems for later on (eg if the fetus is part of the mother, having
to explain to all our knowledge agents that this might not extend to
genotypes, or if it does, then by chance rather than biological
imperative etc...). In the event of one of two fetuses being
affected, and one pregnancy being terminated, what is the result in
the record to indicate the original number of conceptions, the fact
that a genetic risk actually produced a fetus with a prospective
problem, and the DNA and other data originated in the process of the
testing of the CVS sample? It would be wrong, I feel, to treat the
fetus' diagnosis as one of the mother, as confusion here could lead
to all kinds of erroneous conclusions (one fetus had sickle cell ->
mother - who is actually just a carrier - has sickle cell...?).
I do believe that we have this covered - the donor example is a bit of a
mind bender but I think the subject of care and relationship provides the
solution.
COmments?
Cheers, Sam
Hi,
Yes nice, but ...
Dealing with 80% of all 'normal' problems that can be encountered is
difficult enough.
'Give me a solution and I will find the problems, the scenario's that will
brake the solution'
The 20% of 'abnormal' problems can (and will have to be) dealt with later.
Gerard
Matthew
Great scenario's
1. If prenatal diagnosis is being done by chorionic villus sampling
(CVS) in a twin pregnancy (which does happen) then it is the placenta
- or rather the placentas - which are sampled. Each placenta has a
DNA genotype matching that of the fetus attached to it (ie not the
mother) as the placenta is an extension of the fetus. If however the
fetus is an extension of the mother, then are we really saying we
like the idea that the placentas may have to appear as multiple
"temporary" organs of the mother, which are different in every
pregnancy, and which never share her total genotype? A likely outcome
would be selective termination of one twin (the affected one, on the
basis of a molecular finding and either a makable or a confidently
predictable clinical diagnosis) leaving the unaffected one to go to
term. Thus a part of the mother is diagnosed clinically and
molecularly, findings which are important for the mother later on, in
that they'll trigger appropriate care next time around, but which
*must not* be confused with her own clinical diagnoses or test
results.This example is a very good one - it shows that there is a need to identify
the fetus over and above its relationship with the mother. I have suggested
that we use a local label for this - could be LOCAL:Twin1_2002. - the
relationship for the information is FETUS. The important thing here is that
we have the idea of subject of care - a unique identifier (or self) and the
relationship.The sampling is the taking of a histological sample of a body part - the
subject is the FETUS. There will be a procedure record, a sample and a
histological report - all with the fetus as the subject of care for the
data - in a composition that is part of the mothers EHR. It may be copied to
the child's EHR in the future - I have thought about the transform required
to do this and it should be relatively easy if the relationship of the two
records is stated first.2. Bone marrow transplantation, where it may be necessary to
distinguish that the post-transplant patient may still have a
haemoglobin variant, but a different one to the one they were treated
for, and accordingly no disorder to go with it, but will still be
genetically as they were before the treatment in every other organ.
Also the donor was most probably selected from the same family, so
confidentiality may be slightly different...?Interesting - who is the subject of care then? I guess this will be deduced
from the data - I do not think that we can say the origins of all the states
in a person that arise following a donation - at times it may be ambiguous
(graft v host).We have considered 'donor' to be the relationship - but the person may have
a relationship with the person apart from this? I do not think that the
subject of care needs to be the donor then - it can be the family member as
it is known who they are. Interesting!It seems to me that we can either organise our concepts to make this
kind of record easier and more obvious, or we can begin to inbuild
problems for later on (eg if the fetus is part of the mother, having
to explain to all our knowledge agents that this might not extend to
genotypes, or if it does, then by chance rather than biological
imperative etc...). In the event of one of two fetuses being
affected, and one pregnancy being terminated, what is the result in
the record to indicate the original number of conceptions, the fact
that a genetic risk actually produced a fetus with a prospective
problem, and the DNA and other data originated in the process of the
testing of the CVS sample? It would be wrong, I feel, to treat the
fetus' diagnosis as one of the mother, as confusion here could lead
to all kinds of erroneous conclusions (one fetus had sickle cell ->
mother - who is actually just a carrier - has sickle cell...?).I do believe that we have this covered - the donor example is a bit of a
mind bender but I think the subject of care and relationship provides the
solution.COmments?
Cheers, Sam
____________________________________________
Dr Sam Heard
Ocean Informatics, openEHR
Co-Chair, EHR-SIG, HL7
Chair EHR IT-14-2, Standards Australia
Hon. Senior Research Fellow, UCL, London105 Rapid Creek Rd
Rapid Creek NT 0810Ph: +61 417 838 808
sam.heard@bigpond.com
www.openEHR.org
www.HL7.org
__________________________________________-
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Gerard Freriks, arts
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+31 654 792800
Very pragmatic, but ...
If dealing with the 20% of 'abnormal' problems later, means completely
redesigning and reimplementing a solution, then your pragmatic approach
may not be the best.
Designing and building a national or international EHR-based healthcare
system is like getting someone to the moon - it is a complex and
expensive exercise. Better to pre-empt the abnormal situations and
build something that you hope will succeed, than to build a rocket
that you know will fail.
eric
I think that the only systematic approach is to make a new EHR for each
genetically distinct individual. This means making an EHR for a foetus
as soon as anything at all is to be measured about it, and also storing
the link of this EHR to that of the mother. If the foetus dies in utero
or is aborted, then its EHR shows this properly as "death" jsut as it
would be shown in a normal person's record. As for situations where the
individual's DNA distinctness is not totally clear like the bone marro
transplant situation, I don't think that is a problem. Observations can
be made on genetically different material to the patient, in the
patient's record, as long as these observations relate to the care of
that patient. E.g. blood tests, other tests made to a sibling for the
sole purpose of doing a transplant into the patient - should probably go
into the patient's EHR...
But I do think we need to forget the idea that because a foetus is not
really a person, it is not a possible subject of an EHR. I think we have
to work on genetic distinction and distinct organism (whether called
"human" or not) instead.
thoughts?
- thomas
Sam Heard wrote:
>Matthew
>
>Great scenario's
>
>>1. If prenatal diagnosis is being done by chorionic villus sampling
>>(CVS) in a twin pregnancy (which does happen) then it is the placenta
>>- or rather the placentas - which are sampled. Each placenta has a
>>DNA genotype matching that of the fetus attached to it (ie not the
>>mother) as the placenta is an extension of the fetus. If however the
>>fetus is an extension of the mother, then are we really saying we
>>like the idea that the placentas may have to appear as multiple
>>"temporary" organs of the mother, which are different in every
>>pregnancy, and which never share her total genotype? A likely outcome
>>would be selective termination of one twin (the affected one, on the
>>basis of a molecular finding and either a makable or a confidently
>>predictable clinical diagnosis) leaving the unaffected one to go to
>>term. Thus a part of the mother is diagnosed clinically and
>>molecularly, findings which are important for the mother later on, in
>>that they'll trigger appropriate care next time around, but which
>>*must not* be confused with her own clinical diagnoses or test
>>results.
>>
>
>This example is a very good one - it shows that there is a need to identify
>the fetus over and above its relationship with the mother. I have suggested
>that we use a local label for this - could be LOCAL:Twin1_2002. - the
>relationship for the information is FETUS. The important thing here is that
>we have the idea of subject of care - a unique identifier (or self) and the
>relationship.
>
>The sampling is the taking of a histological sample of a body part - the
>subject is the FETUS. There will be a procedure record, a sample and a
>histological report - all with the fetus as the subject of care for the
>data - in a composition that is part of the mothers EHR. It may be copied to
>the child's EHR in the future - I have thought about the transform required
>to do this and it should be relatively easy if the relationship of the two
>records is stated first.
>
>>2. Bone marrow transplantation, where it may be necessary to
>>distinguish that the post-transplant patient may still have a
>>haemoglobin variant, but a different one to the one they were treated
>>for, and accordingly no disorder to go with it, but will still be
>>genetically as they were before the treatment in every other organ.
>>Also the donor was most probably selected from the same family, so
>>confidentiality may be slightly different...?
>>
>
>Interesting - who is the subject of care then? I guess this will be deduced
>from the data - I do not think that we can say the origins of all the states
>in a person that arise following a donation - at times it may be ambiguous
>(graft v host).
>
>We have considered 'donor' to be the relationship - but the person may have
>a relationship with the person apart from this? I do not think that the
>subject of care needs to be the donor then - it can be the family member as
Hi,
I think that the only systematic approach is to make a new EHR for each
genetically distinct individual. This means making an EHR for a foetus
as soon as anything at all is to be measured about it, and also storing
the link of this EHR to that of the mother.
This is a very interesting issue for the Ligne de vie (LdV), but a challenge as well : the foetus LdV could be also seen as a window inside his mother's LdV during the in-utero period of time.
Hard work, but we have to think to it early enough.
Philippe
Tom
This is not necessary or appropriate - as Matthew has said - placenta is
both! It is important that our solution allows information about another
person to be in an EHR - family history is a good example. We will not link
between peoples EHRs - ever in my opinion.
Cheers, Sam
Sam Heard wrote:
Tom
This is not necessary or appropriate - as Matthew has said - placenta is
both!
don't see a problem. If observatios are being made from the placenta to determine the health / viability of the foetus, then these are added to the record of the foetus. Why not?
It is important that our solution allows information about another
person to be in an EHR - family history is a good example. We will not link
between peoples EHRs - ever in my opinion.
THis would be done in the demographic service - not in the EHR. It's just a family relationship link.
- t
Sam,
I take Tom's position. The issue is whether there is a one to one
mapping between subject of care and an EHR.
From a health perspective, a foetus can be considered as a subject of
care in its own right.
A foetus is tightly coupled to a mother, but is sufficiently
distinct for there to be a need for a separate EHR under certain
circumstances. The question is when do we spawn a new record?
Under normal circumstances, this would probably occur at birth, partly
since the foetus becomes a person under law, partly because it becomes
an entity predominantly independent of the mother, partly because prior
to birth there is rarely a need for information specifically regarding
the foetus.
However, when the foetus does become a subject of care, i.e. measurements
and interventions are undertaken specifically for the benefit of the
foetus, there are good grounds for spawning a separate EHR.
Either approach requires a more complex EHR model. But surely the
raison d'etre of an EHR is to promote the care of a subject? Or is it
being proposed for some other reason of which I am unaware?
eric
Eric Browne wrote:
Sam,
I take Tom's position. The issue is whether there is a one to one
mapping between subject of care and an EHR.From a health perspective, a foetus can be considered as a subject of
care in its own right.
and I think it can certainly be considered a "subject of clinical Statements" even if one feels that making observations on a foetus is not "care"...
A foetus is tightly coupled to a mother, but is sufficiently
distinct for there to be a need for a separate EHR under certain
circumstances. The question is when do we spawn a new record?
Under normal circumstances, this would probably occur at birth, partly
since the foetus becomes a person under law, partly because it becomes
an entity predominantly independent of the mother, partly because prior
to birth there is rarely a need for information specifically regarding
the foetus.
which is what I used to think, based on Sam's thinking, but having had this discussion, I have changed my mind. As soon as the first observation is made of the foetus it should have its own EHR.
However, when the foetus does become a subject of care, i.e. measurements
and interventions are undertaken specifically for the benefit of the
foetus, there are good grounds for spawning a separate EHR.Either approach requires a more complex EHR model.
I'm not sure what these are yet, but I guess I can see a few things that need to be sorted out:
- connection between mother and child (can be done in the demogarphic server)
- when there are twins
- when things go wrong, e.g. ectopic pregnancies
But surely the
raison d'etre of an EHR is to promote the care of a subject? Or is it
being proposed for some other reason of which I am unaware?
not as far as I know!
- thomas
A foetus is tightly coupled to a mother, but is sufficiently
distinct for there to be a need for a separate EHR under certain
circumstances.
What do you call "certain circumstances" ; anyway, the follow up echographies during pregnancy belong to the future baby.
The question is when do we spawn a new record?
Under normal circumstances, this would probably occur at birth, partly
since the foetus becomes a person under law, partly because it becomes
an entity predominantly independent of the mother, partly because prior
to birth there is rarely a need for information specifically regarding
the foetus.which is what I used to think, based on Sam's thinking, but having had this discussion, I have changed my mind. As soon as the first observation is made of the foetus it should have its own EHR.
I agree with that.
A solution coul be to open an EHR immediately (first echography ?) and have this EHR usable as a "time delimited window" inside the mother EHR.
The other solution (more pragmatic) would be to have the mother's pregnancy "Problem" (just POMR way of labelling things) being opened as a "before birth window" inside the baby record.
It is more pragmatic since the "system" you work on during pregnancy is the mother (with extra "organs").
I can't guess the legal issues.
Philippe
Dear All,
It might be useful for me to clarify why I proposed the CVS use case
in the first place. I saw Sam's assertion that "the fetus can be
treated as part fo the mother", and that bothered me because while
that's the legal state of affairs in many places, if implemented
thoroughly it also means every woman is a genetic mosaic with
different genotypes every time she's pregnant, which seems like a
minefield to me - do we really want to make it that hard?
The placenta arises because it would appear not to be part of the
fetus, and it's the mother who develops it, but it's actually the
thing which is tested to establish a genotype for the fetus wihtout
being invasive of it (it replaced fetal blood sampling in the second
trimester for that purpose), so again the mosaic problem arises. My
main concern was to have a way of clearly determinig which genotype(s
- some people are mosaics anyway!) are actually the mother's, which
are the fetus' and which are neither in that like the placenta they
simple vanish from the picture outside a given window...
The bone marrow case was more about seeing a bone marrow transplanted
patient as a therapeutically created mosaic, but making sure that it
could be recorded that this individual has in effect an unreliable
blood genotype for extrapolating that to other organs (antenatal care
at least in the UK assumes that if you've sampled the blood you've
sampled the individual...!). It's also interesting because the donor
is almost certainly a close relative (so it's perhaps not the same
kind of secret) but is also probably alive (ie the organ transplanted
has not been "harvested" after a trauma...). Again it's a window, but
this time open-ended assumig graft versus host can be avoided...
I'm beginning to see a general question here, which would also cover
prostheses (just because the hip is made of titanium...) but more
interestingly tumours which are "of" the organ in or at which they
are located, but which are histologically and genetically different,
are additional masses, and may also be "temporary" in that once
detected they may be removed or suppressed/shrunk in some other
way...
On the question of assigning identifiers, when the reason for the
selective termination of one of twin pregnancies is a lab result and
a prediction rather than something you could see visibly on
ultrasound etc, does anyone know how obstetricians work out which the
target fetus is? Normally in medicine such things seem to be done by
laterality (for kidneys, limbs, etc.) but I was under the impression
that fetuses were too mobile to reliably do it that way...
Regardig new EHRs etc, might there be scope for mimicking what nature
does - a child EHR which for example must inherit its identifier
context from its mother as it really can only be identified
meaningfully by a qualifier of "this is the demographic person inside
which it is located"...?
Yours,
Matthew
Matthew Darlison wrote:
Regardig new EHRs etc, might there be scope for mimicking what nature does - a child EHR which for example must inherit its identifier context from its mother as it really can only be identified meaningfully by a qualifier of "this is the demographic person inside which it is located"...?
This could be solved in at least two ways.
1. In the demographic server, we create 2 PERSONs, and use a foetus archetype for one. We put a mother/in utero PARTY_RELATIONSHIP between them.
however, the in utero relationship as a clinical phenomenon is probably more important than the legal mother/child relationship, which is the kind of thing demographic systems are designed for (this relationship does not change as long as both parties are alive, but the carrying/in utero physical relationship is fairly temporary.
2. In the EHR system we use an archetype for a persistent transaction in the foetus's EHR which indicates the "in utero" situation (this would probably be the same archetype that carries other important clinical indicators, like "living", "deceased" etc). In the mother's EHR there is also a "carrying child" indicator.
2a. THese could refer to distinct demographic entities found in the demographic server, if we think that the foetus should be given one. If not (and I agree that it might not be that useful, since there is no name, contact address etc (other than the mother) and the foetus is not "contactable" in any real way - in fact it cannot act as a PARTY (i.e. participate in anything). So - let's say that the foetus either has nothing in the demographic system, or else we introduce a special party called "unborn foetus" (the same thing I suggest for "anonymous donor"). Then the Foetus can have a demographic entity to which its EHR is attached, without the needless creation of "real" PARTYs with all their details, all initially meaningless for a foetus (and probabl a newborn for quite some time...).
The alternative which I imagine Sam would prefer is to make one or more transactions dedicated to the foetus in the mother's EHR and put them in their own "unborn child" folder or so. These would then be moved out of the mother's EHR when the baby is born. I think this would work ok, but it is kind of a special case, and we have to make sure all software understands it. Maybe we could formalise this situation so that one EHR can "give birth" to another, which is implied by Matthew's words. It sounds funny, but maybe it isn't - why not - there is nothing to stop us from defining a "give birth" operation on the interface of the EHR (trekkies and unix-heads will naturally insist that the operation be called "spawn", and who would I be to argue....?-).
The situation is not necessarily the same for anonymous donors, since no care is being given to them - they don't need their own EHR - the observations of the organs etc belong in the EHR or the recipient since it is about his/her care, not the donors.
For non-anonymous donors, then of course an EHR is needed - the health of both donor and recipient during kidney, bone marrow and other similar operations, and afterward is important jsut as in the normal situation of any individual.
I am happy to see this discussed further; in summary I suggest that the basic possibilities are :
a - create a new EHR as soon as a foetus has any observation done on it, link it to an "unborn baby" demographic entity
b - define the semantics of an EHR "being pregnant" with another nascent EHR, and a "give birth to EHR"/"spawn EHR" operation to be carried out when the real birth takes place. (The less fortunate outcomes for the foetus could also make sense, as long as they have operations defined for them, including "abort", "die naturally" etc).
Having thought of b), and the possibility of one day seeing one EHR give birth to another, I am quite taken with the possibility....however, it still creates the precedent that there are EHRs containing two (or more) subjects of care.
thoughts?
- thomas beale
On Thu, 19 Dec 2002 07:24:33 +0930
I think that the only systematic approach is to make a new EHR for each genetically distinct individual. This means making an EHR for a foetus as soon as anything at all is to be measured about it, and also storing the link of this EHR to that of the mother.
But if you really want to think forwardly and cover all bases, what about clones? I'm being half facetious, but it makes for an interesting discussion.
Ignacio Valdes wrote:
On Thu, 19 Dec 2002 07:24:33 +0930
I think that the only systematic approach is to make a new EHR for each genetically distinct individual. This means making an EHR for a foetus as soon as anything at all is to be measured about it, and also storing the link of this EHR to that of the mother.
But if you really want to think forwardly and cover all bases, what about clones? I'm being half facetious, but it makes for an interesting discussion.
well, I would have laughed at that idea last year, but not now...
- thomas beale
We actually dealt with this topic at Duke in the OB system in the early
1980s. We did create a record. One interesting problem was "ghost"
pregnancies in which it appeared for a period of time to have two fetuses
later to be one. Our actually execution turned out to not create the new
baby record until birth but to back load the data from the mother. This
also solved IDing problems.
Ed Hammond
Genetic make-up is only one possible distinctive feature.
We all know that even in human health care we can encounter twins, triples,
etc that were cloned in a test tube and implanted in utero of a woman.
What sets them aside?
I fear it is the administrative name that they receive in the end after a
delivery. Until then 'who knows who' in the womb of a pregnant woman?
We must accept that we treat things without a name but with a more or less
distinctive context or other features than an administrative name.
Gerard
I think that the only systematic approach is to make a new EHR for each
genetically distinct individual. This means making an EHR for a foetus
as soon as anything at all is to be measured about it, and also storing
the link of this EHR to that of the mother. If the foetus dies in utero
or is aborted, then its EHR shows this properly as "death" jsut as it
would be shown in a normal person's record. As for situations where the
individual's DNA distinctness is not totally clear like the bone marro
transplant situation, I don't think that is a problem. Observations can
be made on genetically different material to the patient, in the
patient's record, as long as these observations relate to the care of
that patient. E.g. blood tests, other tests made to a sibling for the
sole purpose of doing a transplant into the patient - should probably go
into the patient's EHR...But I do think we need to forget the idea that because a foetus is not
really a person, it is not a possible subject of an EHR. I think we have
to work on genetic distinction and distinct organism (whether called
"human" or not) instead.thoughts?
- thomas
Sam Heard wrote:
Matthew
Great scenario's
1. If prenatal diagnosis is being done by chorionic villus sampling
(CVS) in a twin pregnancy (which does happen) then it is the placenta
- or rather the placentas - which are sampled. Each placenta has a
DNA genotype matching that of the fetus attached to it (ie not the
mother) as the placenta is an extension of the fetus. If however the
fetus is an extension of the mother, then are we really saying we
like the idea that the placentas may have to appear as multiple
"temporary" organs of the mother, which are different in every
pregnancy, and which never share her total genotype? A likely outcome
would be selective termination of one twin (the affected one, on the
basis of a molecular finding and either a makable or a confidently
predictable clinical diagnosis) leaving the unaffected one to go to
term. Thus a part of the mother is diagnosed clinically and
molecularly, findings which are important for the mother later on, in
that they'll trigger appropriate care next time around, but which
*must not* be confused with her own clinical diagnoses or test
results.This example is a very good one - it shows that there is a need to
identify
the fetus over and above its relationship with the mother. I have
suggested
that we use a local label for this - could be LOCAL:Twin1_2002. - the
relationship for the information is FETUS. The important thing here isthat
we have the idea of subject of care - a unique identifier (or self)
and the
relationship.
The sampling is the taking of a histological sample of a body part - the
subject is the FETUS. There will be a procedure record, a sample and a
histological report - all with the fetus as the subject of care for the
data - in a composition that is part of the mothers EHR. It may becopied to
the child's EHR in the future - I have thought about the transform
required
to do this and it should be relatively easy if the relationship of the two
records is stated first.2. Bone marrow transplantation, where it may be necessary to
distinguish that the post-transplant patient may still have a
haemoglobin variant, but a different one to the one they were treated
for, and accordingly no disorder to go with it, but will still be
genetically as they were before the treatment in every other organ.
Also the donor was most probably selected from the same family, so
confidentiality may be slightly different...?Interesting - who is the subject of care then? I guess this will be
deduced
from the data - I do not think that we can say the origins of all the
states
in a person that arise following a donation - at times it may be ambiguous
(graft v host).We have considered 'donor' to be the relationship - but the person may
have
a relationship with the person apart from this? I do not think that the
subject of care needs to be the donor then - it can be the familymember as
it is known who they are. Interesting!
It seems to me that we can either organise our concepts to make this
kind of record easier and more obvious, or we can begin to inbuild
problems for later on (eg if the fetus is part of the mother, having
to explain to all our knowledge agents that this might not extend to
genotypes, or if it does, then by chance rather than biological
imperative etc...). In the event of one of two fetuses being
affected, and one pregnancy being terminated, what is the result in
the record to indicate the original number of conceptions, the fact
that a genetic risk actually produced a fetus with a prospective
problem, and the DNA and other data originated in the process of the
testing of the CVS sample? It would be wrong, I feel, to treat the
fetus' diagnosis as one of the mother, as confusion here could lead
to all kinds of erroneous conclusions (one fetus had sickle cell ->
mother - who is actually just a carrier - has sickle cell...?).I do believe that we have this covered - the donor example is a bit of a
mind bender but I think the subject of care and relationship provides the
solution.COmments?
Cheers, Sam
____________________________________________
Dr Sam Heard
Ocean Informatics, openEHR
Co-Chair, EHR-SIG, HL7
Chair EHR IT-14-2, Standards Australia
Hon. Senior Research Fellow, UCL, London105 Rapid Creek Rd
Rapid Creek NT 0810Ph: +61 417 838 808
sam.heard@bigpond.com
www.openEHR.org
www.HL7.org
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Gerard Freriks, arts
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Dear All
Sorry, I have been out of touch over the Xmas - great surf on the east
coast! This may be old ground?
This conversation is sounding a little like a technical solution rather than
a pragmatic solution. My response is that both solutions are required - a
fetal record (rare) and fetal recordings in the maternal record.
The fetal heart rate is an example of a measurement that is NOT the mother
that is appropriate for the maternal record - and I do not think that anyone
is going to start a fetal record for this value.
Philippe is right - fetal scans will sometimes (rarely) have implications
for the future child and will need to be copied to that record in the
future.
I do not think that linking between records will be an acceptable approach -
although it is attractive technically - as it will pose a lot of privacy
issues that the public are not ready for at this stage - neither am I
frankly!
Applications can clearly link the records as they wish with the appropriate
access controls. The scenario of not having family history records but
rather a set of links to all relatives records is not tenable in the current
environment and should not be proposed as a solution at this stage. The fact
that openEHR would allow this technically is not a problem.
I will read on in this thread....Sam