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 >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 > > -- .............................................................. 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