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 On 2002-12-17 14:24, "Sam Heard" <sam.heard at bigpond.com> 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 > 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, London > > 105 Rapid Creek Rd > Rapid Creek NT 0810 > > Ph: +61 417 838 808 > > sam.heard at bigpond.com > > www.openEHR.org > www.HL7.org > __________________________________________ > > - > If you have any questions about using this list, > please send a message to d.lloyd at openehr.org -- <private> -- Gerard Freriks, arts Huigsloterdijk 378 2158 LR Buitenkaag The Netherlands +31 252 544896 +31 654 792800 - If you have any questions about using this list, please send a message to d.lloyd at openehr.org
